Creating families / Créons des familles by Fertility Matters Canada

NOT MY GENES, BUT DEFINITELY MY KIDS!

EGG DONATION: WHAT YOU SHOULD KNOW

32 DOULA DE FERTILITÉ OU D’INFERTILITÉ

44 WHY YOGA FOR FERTILITY?

Canadian Magazine of Reproductive Health • Revue canadienne de la santé reproductive

COLUMNS / CHRONIQUES

Creating FAMILIES Créons des familles

President’s Message . . . . 6 Message de la présidente . . 7 What’s New? . . . . . . . . . 8-11 Quoi de neuf ? . . . . . . . . . 8-11 Patient’s Perspective . . . . 20 The LGBTQ Column . . . . . 58

WINTER / HIVER 2013-14

The Doctor’s Column . . . 64

FEATURES / DOSSIERS

La chronique du médecin . . 65 Reader’s Corner . . . . . . . . . . 66 Le coin des lecteurs . . . . . 67

Primary Ovarian Insufficiency: How to Deal With the Diagnosis .................. 26 by PATRICIA MONNIER, M.D., PH.D., REPRODUCTIVE ENDOCRINOLOGIST

L’Infertilité par les circonstances de la vie ............................................... 48 par CATHERINE-EMMANUELLE DELISLE

The opinions expressed in this magazine are personal and do not necessarily reflect those of Creating Families. Les opinions exprimées dans ce magazine sont personnelles et ne reflètent pas nécessairement celles de Créons des familles.

The Infertility Awareness Association of Canada (IAAC) L'Association canadienne de sensibilisation à l'infertilité (ACSI) 475 Dumont Ave., Suite 201, Dorval, QC H9S 5W2 • 514 633-4494 • 1 800 263-2929

52 CoQ10 AND ITS ROLE IN AGING EGGS

www.iaac.ca WINTER/HIVER 2013-14 • Creating Families

Creating FAMILIES Créons des familles

SILVER SPONSORS I A A C NATIONAL BOARD OF DIRECTORS

Astra Fertility Clinic

VICE-PRESIDENT • Janet Takefman

Fertility Centers of Illinois

Pamela Burton • Ellen Greenblatt Dalit Dell Hume • Sherry Levitan Al Yuzpe

Genesis Fertility Centre

ACTING EDITOR-IN-CHIEF Gloria Poirier gloria@iaac.ca EDITOR Véronique Robert carotexte@videotron.ca

ARTUS Centre

PRESIDENT • Jocelyn Smith

First Steps Fertility Grace Fertility Centre Hannam Fertility Centre Heartland Fertility & Gynecology Clinic ISIS Regional Fertility Centre

TRANSLATIONS Véronique Robert

PLATINUM SPONSORS

IVF Canada & The LIFE Program

Merck

London Health Sciences Centre, The Fertility Clinic

EMD Serono ART DIRECTOR / GRAPHIC DESIGN Sheldon Kravitz sheldon.kravitz@sympatico.ca

Ferring Pharmaceuticals GOLD SPONSORS CReATe Fertility Centre LifeQuest Centre for Reproductive Medicine MUHC Reproductive Centre

Mount Sinai Centre for Fertility & Reproductive Health ONE Fertility, Burlington Ottawa Fertility Centre Pacific Centre for Reproductive Medicine Regional Fertility Program Shady Grove Fertility

WINTER/HIVER 2013-14 • Creating Families

President’s

Photo by Lisa Minnini

MESSAGE

Jocelyn Smith

ecember is a time for giving. Whether you are celebrating Christmas, Hanukkah, Kwanzaa or another traditional holiday, this is when you think of making people around you happy.

This year, I ask you to be generous towards IAAC. With infertility on the rise and financial resources becoming scarce, we have been doing some soul-searching about how we can best serve the infertile community in Canada. It became obvious that our top priority should be advocacy aimed at getting funding for fertility treatment for all Canadians who need it. An ongoing dream has been to set up a sponsorhip program to help those most in need of financial assistance for treatment. We think it is high time we get on to it. We want to expand our support help line, offer more information on our website, increase the presence of our support groups and extend them to those who experience grief through miscarriage or want to explore options such as adoption or child-free living. In response to the growing popularity of online and mobile content and the ability to reach a broader audience through this medium, we have decided to take Creating Families online. Starting with the current issue, the publication will be available through our website as a flip book and also

Créons des familles • WINTER/HIVER 2013-14

to mobile readers on their smart phones and tablets. We will be distributing promotional bookmarks to waiting rooms, at conferences, and other events to publicize this important fertility resource and also leveraging online ads to drive a broader readership for Creating Families. This new medium will empower us to deliver more dynamic content (video, advertisements, etc.) which will be more engaging for our readers. In tandem, we will also be deploying a survey to obtain feedback from our loyal readers on what is most valued in the publication, what could be improved and what may no longer be required. We look forward to your input as always. On behalf of IAAC I wish to extend our warmest thanks to all the dedicated individuals who contributed to the success of several recent fundraising events: sponsors, donors, volunteers and participants. The Family Matters Challenge was held in Victoria, BC on Sept 27th. In Alberta, Lenore Tochor and her team participated in the Great Canadian Death Race; and when Alison and Sean Raynor threw a party to celebrate their new home, they encouraged their guests to give a donation to IAAC in lieu of a gift. Please have a look at the News & Events section on our website for photos and videos of these events! (www.iaac.ca) Might you have an idea for a fund-raising activity? Be creative, have fun and don’t be shy - contact us by phone or email at info@iaac.ca. We will be delighted to discuss it with you. As you can imagine, we are thrilled to be offering the magazine online. We are also very pleased with the contents of this issue. Starting with the cover. We felt it was time to have two women in love on our cover, especially considering the thoughtful column Rachel Epstein has contributed. It is my hope that all patient care professionals read this article about LBQ women. Dr. Patricia Monnier’s article will help many women understand what goes

on when they receive the diagnosis of primary ovarian insufficiency, as well as when and how they should be treated. It is surprising how many women – and men – with fertility problems still do not get diagnosed properly or in a timely manner. Many of us are not well informed either about what is involved in egg donation. I am very grateful to Michelle Flowerday for explaining the ins and outs of this option which an increasing number of women are turning to. The moving story related by Vince Londini, “Not My Genes, Definitely My Kids”, is a lesson in generosity and wisdom. Naturopath Tracy Malone offers a fascinating article on CoQ10. Patient’s Perspective will make you smile, and hopefully bring understanding to people who still say inappropriate things to infertile individuals. I want to thank Katia Petitclerc, whose illuminating piece tells us what a doula can do for a couple hoping to have a baby, and our dear friend Sue Dumais, who makes it so clear why yoga can help women deal with their difficulty conceiving. I hope you enjoy reading these thought-provoking articles. I encourage you to share the link to this magazine with your family and friends. Why not make a donation on their behalf in lieu of a gift? (www.iaac.ca/en/charitable-donations) Please spread the word! IAAC is a registered charity and our success is directly linked to the generosity of sponsors and donors. I wish you a happy, healthy, heartwarming and gratifying holiday season!!!

Jocelyn Smith

MESSAGE

de la présidente

écembre est le mois du don. Que vous célébriez Noël, Hanukkah, Kwanzaa ou une autre fête traditionnelle, c’est un moment où vous cherchez à faire des heureux autour de vous.

Cette année, je vous demande d’être généreux envers l’ACSI. Compte tenu des taux d’infertilité en hausse et des ressources financières en baisse, nous avons fait un examen de conscience à propos de la meilleure façon pour nous de servir les personnes infertiles au Canada. Il nous est apparu évident que notre priorité devrait être de militer pour le financement public des traitements de fertilité pour tous les Canadiens qui en ont besoin. Nous rêvons depuis longtemps d’instituer un programme de parrainage pour aider ceux et celles qui nécessitent un soutien financier pour suivre des traitements. Nous pensons qu’il est grand temps de passer à l’action. Nous voulons élargir notre soutien au téléphone, offrir plus d’information sur notre site Web, accroître la présence de nos groupes de soutien et les étendre à ceux et celles qui vivent un deuil à cause d’une fausse couche ou qui désirent explorer l’adoption ou la vie sans enfant. En réponse à la popularité croissante du contenu en ligne et sur les appareils de téléphonie mobile, ainsi que pour toucher un public plus large, nous avons décidé de mettre Créons des familles en ligne. À partir du présent numéro, notre magazine sera disponible sur notre site Web sous forme de flip book, en plus d’être également accessible aux utilisateurs de tablettes et de téléphones intelligents. Nous distribuerons un signet promotionnel dans les salles d’attente,

à des congrès et à d’autres événements, afin de publiciser cette ressource importante dans le domaine de la fertilité qui, de surcroît, permettra de démultiplier les publicités en ligne afin d’élargir le réseau de lecteurs de Créons des familles. Grâce à ce nouveau média, nous pourrons proposer à nos lecteurs un contenu plus dynamique (vidéos, annonces, etc.) et plus attrayant. Parallèlement, nous effectuerons une enquête pour sonder nos fidèles lecteurs et lectrices sur ce qu’ils/elles apprécient le plus dans notre publication, ce qui pourrait être amélioré et ce qui est peut-être superflu. Comme toujours, nous serons très heureux de recevoir vos commentaires. De la part de l’ACSI, je veux offrir nos sincères remerciements aux nombreux individus si dévoués qui ont contribué au succès de plusieurs collectes de fonds récentes : les commanditaires, donateurs, bénévoles et participants. Défi Affaire de Famille a eu lieu à Victoria, en CB, le 27 septembre dernier. En Alberta, Lenore Tochor et son équipe ont terminé la Great Canadian Death Race; et quand Alison et Sean Raynor ont pendu la crémaillère dans leur nouvelle demeure, ils ont incité leurs invités à faire un don à l`ACSI plutôt que d’apporter un cadeau. Consultez notre site web pour visionner des photos et vidéos de ces évènements (www.iaac.ca/fr ). Comme vous pouvez l’imaginer, nous sommes ravis d’offrir désormais le magazine en ligne. Nous sommes également très heureux du contenu de ce numéro. À commencer par la couverture. Nous trouvons qu’il était temps de montrer deux femmes amoureuses sur la couverture, surtout compte tenu de la chronique substantielle que Rachel Epstein nous offre. J’espère que tous les professionnels de la santé liront cet article sur les femmes LBQ. Le texte de la Dre Patricia Monnier sur l’insuffisance ovarienne précoce aidera beaucoup de femmes à comprendre ce qui se passe quand elle reçoivent ce diagnostic, et aussi quand et comment elles devraient être traitées. Il est surprenant à quel point nombre de femmes – et d’hommes – qui

ont des problèmes de fertilité ne sont toujours pas diagnostiqués à temps. Nous ne sommes généralement pas très informés non plus au sujet du don d’ovules. Je suis très reconnaissante à Me Michelle Flowerday d’expliquer les tenants et aboutissants de cette solution vers laquelle les femmes se tournent en nombre croissant. L’histoire touchante racontée par Vince Londini, « Pas mes gènes, certainement mes enfants », nous offre une leçon de générosité et de sagesse. La naturopathe Tracy Malone propose un article fascinant sur la CoQ10. Patient’s Perspective vous fera sourire, et, espérons-le, fera réfléchir ceux qui tiennent encore des propos inappropriés aux personnes infertiles. Je veux remercier Katia Petitclerc dont l’article lumineux nous renseigne sur ce que peut faire une doula pour un couple espérant un enfant, et notre chère amie Sue Dumais, qui explique clairement pourquoi le yoga peut aider les femmes à composer avec leurs difficultés à concevoir. J'espère que vous apprécierez ces articles propres à susciter la réflexion. Je vous encourage à partager le lien vers ce magazine avec vos proches. Pourquoi ne pas faire un don en leur nom comme cadeau ? (http://www.iaac.ca/fr/dons-de-charite) S'il-vous-plaît, faites-le savoir : l'ACSI est un organisme de charité et notre succès est lié directement à la générosité de nos donneurs et commanditaires. Que cette saison vous apporte bonheur, santé et toutes sortes de bonnes choses !

Jocelyn Smith

WINTER/HIVER 2013-14 • Creating Families

What’s New? Headlines in the fertility world

A hearty breakfast might help PCOS patients conceive Eating a big breakfast can improve

intake at breakfast, and the other

these results will have to be

fertility in women with PCOS.

half at dinner. After 12 weeks,

confirmed by larger studies, the

Such is the conclusion of a study

insulin resistance (common in

authors say, and these will also

conducted on 60 women with this

PCOS patients) was reduced in the

determine whether any increase in

common syndrome. Participants ate

big breakfast group only, who also

ovulation actually translates into

1,800 calories per day. Half of them

experienced higher levels of

higher pregnancy rates for PCOS

consumed the majority of their

ovulation. However encouraging,

patients.

Un petit-déjeuner copieux peut aider les patientes SOPK à concevoir S’attabler devant un petit-déjeuner

d’entre elles en ont consommé plus

activité ovulatoire plus importante.

substantiel peut augmenter la

de la moitié au petit-déjeuner, et

Pour encourageants qu’ils soient, ces

fertilité des femmes atteintes du

l’autre moitié au repas du soir. Au

résultats devront être confirmés par

syndrome des ovaires polykystiques

bout de 12 semaines, la résistance à

des études plus vastes, notent les

– SOPK. Telle est la conclusion

l’insuline (courante chez les femmes

auteurs, et celles-ci pourront aussi

d’une étude portant sur 60 femmes

atteintes du SOPK) avait diminué

déterminer si l’augmentation de

atteintes de ce problème fréquent.

seulement dans le groupe qui avait

l’activité ovulatoire se traduit par des

Les participantes ont consommé

consommé un petit-déjeuner

taux de grossesse plus élevés chez les

1 800 calories par jour. La moitié

copieux, qui a également connu une

patientes atteintes du SOPK.

Créons des familles • WINTER/HIVER 2013-14

Quoi de neuf ?

Les manchettes dans le monde de la fertilité.

V I F / R F E I V NC A C =

IVF not linked to higher childhood cancer risk

Children born with the help of ART do not run a higher risk of developing cancer during childhood than those conceived spontaneously, a large U.K.

study has concluded. The research, which looked at 106,381 children born from ART between 1992 and 2008, was presented at the last annual meeting of the European Society of Human Reproduction and Embryology held in London, in July of 2013. This is comforting news for people considering assisted reproduction. Older studies had found a risk, but these were conducted several decades ago, before IVF became widely used.

La FIV non liée à un risque de cancer plus élevé dans l’enfance

Les enfants nés avec l’aide des technologies de procréation assistée ne sont pas plus à risque de développer un cancer durant l’enfance que ceux conçus naturellement, conclut une vaste étude britannique. La recherche, qui s’est penchée sur 106 381 enfants nés des TPA entre 1992 et 2008, a été présentée à la dernière réunion annuelle de la Société européenne de reproduction humaine et d’embryologie (ESHRE) tenue à Londres en juillet 2013. Voilà une nouvelle rassurante pour les personnes qui envisagent de recourir à la procréation assistée. Des études plus anciennes avaient noté un risque de cancer, mais elles ont été menées il y a plusieurs décennies, avant que la FIV ne devienne plus courante.

WINTER/HIVER 2013-14 • Creating Families

What’s New?

Digital screening for donor babies

The high-tech New York firm Genepeeks will launch this month – December 2013 – a computer tool that will combine the DNA sequence of a sperm donor and that of a female client in order to potentially weed out donors at risk of producing a diseased child with the woman. For each pairing of a donor with an intended mother, the system will simulate 10,000 hypothetical children using the latest tools of modern genetics. While some observers deem that reducing the risk of giving birth to a child with a genetic disease is a good thing, others raise concerns about possible expansion of screening to other features – thus getting closer to designer babies. Others still warn that interactions between genes and environment may play a role in whether a child inherits a disease or not.

Dépistage numérique pour les bébés issus de donneurs

La firme de haute technologie new yorkaise Genepeeks lancera ce mois-ci – décembre 2013 – un programme informatique qui combinera la séquence d’ADN d’un donneur de sperme et celle d’une cliente afin d’éliminer éventuellement les donneurs à risque d’engendrer avec cette femme un enfant malade. Pour chaque appariement d’un donneur avec la mère d’intention, le système simulera 10 000 enfants hypothétiques en utilisant les outils dernier cri de la génétique moderne. Alors que plusieurs observateurs estiment que réduire le risque de mettre au monde un enfant atteint d’une maladie génétique est une bonne chose, d’autres se disent préoccupés par l’application éventuelle du dépistage à d’autres caractéristiques – ouvrant ainsi la voie à des « bébés sur mesure ». D’autres encore préviennent que les interactions entre les gènes et l’environnement peuvent jouer un rôle qui déterminera si l’enfant héritera ou non d’une maladie.

6,700,000

Number of women aged 15-44 with impaired ability to become pregnant or carry a baby to term in the United States in 2010.

Créons des familles • WINTER/HIVER 2013-14

Nombre de femmes âgées de 15 à 44 ans qui avaient de la difficulté à devenir enceintes ou à mener une grossesse à terme aux États-Unis en 2010. .

Quoi de neuf ? First motherto-daughter uterus transplants take place in Sweden In mid-September 2013, a team of Swedish specialists carried out the first ever mother-to-daughter uterus transplants. During the successful operation which took more than 10 years of preparation and involved over 10 surgeons, two women received wombs donated by their own mothers. The scientists performed the procedure on animals for years before they felt ready to attempt it on women. They hope the new technique will help women who want to conceive but have had their uterus removed for medical reasons or were born without a womb.

Premières transplantations d’utérus de mère à fille en Suède À la mi-septembre 2013, une équipe de spécialistes suédois a effectué les premières transplantations d’utérus de mère à fille. Au cours de cette opération réussie qui a nécessité plus de 10 ans de préparation et plus de 10 chirurgiens, deux femmes ont reçu un utérus donné par leur propre mère. Les médecins ont réalisé l’intervention sur des animaux pendant plusieurs années avant de se sentir prêts à la tenter sur des femmes. Ils espèrent que cette nouvelle technique aidera les femmes qui désirent avoir un enfant mais se sont fait enlever l’utérus pour des raisons médicales ou sont nées sans utérus.

WINTER/HIVER 2013-14 • Creating Families

My Story Not My Genes, but Definitely My Kids! by Vince Londini The fifth of July, 2004 found my wife and me on the brink of the boldest experiment we’d ever tried. Bolder than the five weeks we spent teaching in Kathmandu the summer before. Bolder than the three years we lived beneath the poverty-line in rural America during the late 1990s. Bolder than my trip to the Amazon rainforest basin in southern Venezuela, for which I was to leave the very next day.

Stolen Needles At 11 p.m., Lori would inject herself with the final “booster” dose of hormones in preparation for having her eggs sucked out and fertilized with sperm that didn’t come from me. The procedure

Créons des familles • WINTER/HIVER 2013-14

was scheduled to begin in just over 40 hours. The injection timing was critical. We’d been dining with friends at a restaurant, when at 9 o’clock we exited to discover one of our car windows was smashed. In broad daylight, just outside of the restaurant in which we were dining, we’d been robbed of a black leather case sitting on the front seat. I can only suppose the thief mistook it to hold an electronic device, but within a pocket of that case rested the final needle Lori needed. Weeks of self-administered needles, months of ingested medicines, and years of hope all rested on that one needle. And it was gone.

The next couple of hours were a blur. Phone calls to the emergency resident on call, phone calls to pharmacies open late on a Sunday evening. Finally, a pharmacist connected us with a needle and Lori administered her injection more or less on time. Lori underwent the routine IVF egg retrieval a couple of days later. The eggs were fertilized and the transfer a couple of days after that was successful. I like to point out, with a mischievous grin, that I was thousands of miles away when my eldest daughter was conceived. You see, I’m infertile.

I like to point out, with a mischievous grin, that I was thousands of miles

undergo invasive tests until we’d ruled out male factor. But, the first test couldn’t have been right – so our family doctor sent me to a different laboratory to try again. Except that test result was also strange. There was no way that a healthy guy like me could have zero sperm.

away when my eldest daughter was conceived. Snowy Stream It was sometime during the early months of the year 2000. I don’t remember the date, but I remember the day with crystal clarity. I’d been seeing a specialist in Pittsburgh to diagnose an abnormal test result that my family doctor had discovered. Lori and I had been married for six years, and she’d been off “the pill” for the past four. We’d wanted some time to enjoy each other’s company, but now we were ready to start having kids so we wouldn’t be rearing them when we were senior citizens. After four years of nothing happening, we started to wonder. Actually, we’d wondered a lot earlier than that but we kept thinking that “a little more time” would solve it all. After all, how many anecdotes have you heard about the couple who started pursuing fertility treatments only to have a kid on their own? We didn’t want to be “those folks.” So, we waited.

Soon I was sitting in a specialist’s office after having had a testicular biopsy (ouch!). The doctor told me I have idiopathic azoospermia, which means that everything appears normal, but I have no sperm. And no one knows why. He suggested I take some time to think about it and consider whether I’d want to pursue adoption or donor sperm. “Donor sperm?” Wow, that sounded yucky. I’d never had to imagine we’d need someone else’s gametes to build our family – much less some guy’s sperm. We were school teachers and finding substitutes was a challenge, so Lori hadn’t come down to Pittsburgh with me for my appointment. On the drive home, I pulled over into a State Park. I stared at the snowy river, watching the ice float by - I couldn’t believe this had happened to me. I will never have a child with whom to share my Italian heritage (as improbable as my nearly two-meter frame and light hair makes it seem). The sinking feeling in my gut gave way to tears. I sat behind the wheel of my car and cried a long time. I’d almost never felt so alone...almost...

No Pulse But eventually, I went to get tested. It was a no-brainer. Testing my fertility was trivially simple. No need for Lori to

In March 2005, we found ourselves in the birthing center of the local hospital to

welcome the arrival of our first baby. Lori’s pregnancy had progressed normally. Even though we’d transferred two embryos, only one made it beyond a couple of months. But the loss, while sad, hadn’t adversely affected her or the remaining, growing baby. She was a girl. We were here to have a baby girl! We couldn’t believe our good fortune, to have gotten this far on our first IVF cycle. It seemed almost too good to be true. In fact, words to the effect of, “I should have known this was too good to be true” ran through my head, every time her heart stopped. The birth was progressing with difficulty. For nearly 30 minutes, every time Lori had a contraction our baby’s heart would stop. Quickly, the doctors put in a scalp-clip to monitor the baby’s pulse. Beat, beat, beat, beat. [Contraction] Silence. Then an alarm sounded. The pulse monitor showed a flat line – no heartbeat. 1 2 3 4 5 6 7

WINTER/HIVER 2013-14 • Creating Families

I counted the seconds in my head, hearing the warning tone from the machine, clutching my wife’s leg, lending all of my will and support that we would succeed. Weak beat, weak beat, beat, beat, beat, beat. Every time Lori had a contraction, our baby’s heart stopped. Every time her heart stopped, the silence seemed to stretch on longer. There was absolutely nothing I could do. And I thought I’d felt powerless, when I learned I couldn’t help make the baby we both desired. Here I learned an even deeper level of helplessness. The doctors were amazing. They called in experts, took charge, and delivered our

Créons des familles • WINTER/HIVER 2013-14

healthy baby girl. I wept as I held her in my arms, every moment of silence I’d heard during delivery echoing in my ears. In the weeks that followed, as Lori recovered, she expressed a similar feeling of helplessness. She wondered why her body struggled to perform the most basic female tasks of conceiving, bearing, and delivering a baby. You see, she couldn’t make babies either.

Skipping School Flashback to 2000. After I first got tested, we didn’t know what to do. We were religiously active, zealously “lived right,” and fervently hoped for a miracle. But, one more year turned into two more, and by the end of three more years we knew

we had to take some action. We agreed we didn’t want to grow old with regret, wondering what might have happened if we’d tried something other than waiting. So in the Fall of 2003, we went for another round of tests. Quickly, we re-established my diagnosis: unexplained male-factor infertility, azoospermia. Yeah, it was depressing. The urologist offered to try out new techniques for extracting sperm (if there were any) directly from my testicles. But, I hadn’t exactly enjoyed the testicular biopsy and I worried as to the genetic quality of any sperm we might find. At the same time, Lori underwent tests so that whatever course of action we took, they’d know how her body might respond. We were both school teachers at

How many anecdotes have you heard about the couple who started pursuing fertility treatments only to have a kid on their own? We didn’t want to be “those folks.” So, we waited. the time. She took the day off for the test, and I took the morning off to be with her. The hysterosalpingogram, or HSG test, didn’t take long. After the procedure, we learned that Lori’s tubes were blocked. Even if I had been able to make her pregnant, she wouldn’t have been able to get pregnant. It didn’t seem possible that both of us were infertile. I took the afternoon off, and we both stayed home and cried. We were so surprised, but we didn’t know we were going to face even bigger surprises.

Christmas Eve About one year after the dramatic but healthy birth of our eldest daughter, we were eager to make up for lost time. We returned to the clinic ready to use one of the five frozen embryos we’d set aside from our first live IVF cycle. For some reason, I’d had it in my head that a 25% chance of success would mean that these frozen embryos would be all we’d need to build our family. In fact, I’d begun to worry about what we’d do

with leftover embryos. We were surprised and grieved when all but one of the embryos failed to survive the thaw. Neither Lori nor I wanted Lori to go through the difficult egg retrieval process again, so we’d pinned our hopes on the frozen balls of cells. Only one of them made it, a few cells short but plucky and ready for a chance to grow. So we implanted this last frozen embryo which grew into our middle daughter, due in late January of 2007. After the drama surrounding the conception and birth of our first, we’d hoped for a calm and normal second experience. But the thawing drama wasn’t the only surprise in store for us with daughter number two. On December 23, after a pleasant evening with friends (and no car burglary!), Lori began to experience contractions. And on December 24, our Christmas eve baby was born. At just over 6 lbs., she spent barely a day in the premature babies ward before joining Lori in her room. And she hasn’t stopped being plucky since! Lori is a steady, rocksteady person... never quick to make a fuss and always ready to handle things

calmly. So, maybe our middle daughter gets her pluck from her donor?

Family Planning Back in early 2004, before the conception of my eldest daughter, we wrestled with how to build our family. Two organizations had the most profound impact on our thinking as we worked through our infertility grief toward building a family. First, Beginnings Adoption Agency in Hamilton held an overnight retreat for infertile couples. We found out about it and attended. For the first time, we found ourselves in a room full of people just like us. None of us wanted to be there, and none of us knew exactly how we were going to move forward. The retreat challenged us to first grieve the loss of the child that cannot be. The speakers encouraged us not to confuse family building with a “cure” for infertility and to allow ourselves the space to begin to heal from our loss. The sessions went on to emphasize that in family building, we should think as best we can about the best interests of the child. The speakers explained how Open Adoption

WINTER/HIVER 2013-14 • Creating Families

One Last Push

It was this desire to keep the genetic origins simple that also lead us to choose an Identity Release donor. We hope that if our kids ever want to know, we’ve planned ahead and provided them with the ability to find out. works and why it became the standard approach in our province in response to an era of secrecy, deception, and surprise revelations (often during stressful circumstances). This had a profound effect on our thinking. Second, Jean Haase, social worker at The Fertility Clinic of London Health Sciences, was also the founder of the Southwestern Ontario Donor Conception Support Network. She invited us to the annual Spring Support Group meeting in April 2004, which we attended. Here again we found ourselves surrounded by people who’d faced the same challenges we’d faced, but who had found a path to family through donor conception.

origins uncertainty the kids would experience (they are all fully related by blood to their mother and each other). We wanted to build our family afresh and didn’t feel prepared to take on the additional uncertainty that comes with adopting children that may have been abused or have experienced emotional turmoil. Further, adoption was not readily accessible for us. There weren’t many infants available and we couldn’t afford the legal fees to adopt overseas... not to mention that adopting from a foreign country contradicted our desire to keep the genetic origins story as simple as possible.

Informed as to our major options, we had to weigh whether we would remain childless, choose adoption, or choose donor conception. While at first Lori didn’t want to have a baby if she couldn’t make one with me, she came to feel strongly that she’d like to bear and suckle her own child(ren).

It was this desire to keep the genetic origins simple that also lead us to choose an Identity Release donor. Under this arrangement, the donor agrees to release identifying information upon request to the child once they reach the age 18. We hope that if our kids ever want to know, we’ve planned ahead and provided them with the ability to find out.

This urge to bear a child steered us toward donor conception from the start. As we evaluated our options, a few other items became clearer to us. We wanted to limit the genetic uncertainty (only one unknown genetic history if Lori’s gametes were used). We wanted to limit any

After the IVF cycle that brought about our two older daughters, we seriously contemplated stopping. But the dream of a large family still lingered, in spite of our approaching 40...and we had a bit of sperm left, just enough to try again.

And so, we did. In late 2008, Lori went through another retrieval cycle. Only this time, it didn’t go so well. She developed a moderate case of Ovarian HyperStimulation Syndrome (OHSS). When it came time to transfer the embryos, she already looked about five months pregnant due to the swelling. Perhaps it’s no surprise then that the embryos implanted from the live cycle didn’t make it. For a journey that resulted in so much joy, the birth of our three daughters, it certainly had a lot of dark days. Amongst the darkest of them was our day together in the hospital when Lori miscarried her third pregnancy at almost 20 weeks, which was about 8 weeks after the baby had died. After a few months of rest, Lori decided to try again with the remainder of the

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second cycle’s embryos, a handful that we had frozen in late 2008. Of these, one survived to eventually become our youngest daughter.

There’s no doubt in my daughters’ minds

After an amazingly normal pregnancy, we were surprised by a difficult birth. It had seemed with our second that Lori’s body had figured out the childbirth process. But this labor was hard on Lori. A few years seemed to have taken its toll on her strength. It was all we could do as a team to muster her will to fight and bear the child. Unfortunately, our youngest suffered a brachial plexus injury as she was born. She’s undergone therapy for all three years of her life, and is almost up to full strength in her arm muscles.

or in mine that I’m their father. We share a relationship borne of bandages for scuffed knees, bedtime stories, and piggyback rides in the park. I treasure this. Even though I couldn’t father them,

Supporting Today Shortly after my youngest was born, Jean Haase retired from the Fertility Clinic and asked me to take over active leadership of the Southwestern Ontario Donor Conception Support Network. Since then, we’ve expanded our twice annual meetings to five times a year, meeting in both London (ON) and Toronto. Today my daughters are ages 8, 6, and 3. They run and play, cry and fight, smile and sleep just like every other child we’ve ever known, taught, or met. Even though they don’t know the donor’s identity, they know he exists and that he helped them to be born. We’ve told them about his role since before they could understand it, to avoid any rude surprises, and so they can celebrate the gift that gave them life. After all, it’s their origin. Like most parents, Lori and I want the

I’m a father after all.

freedom to raise our children in the way we see best for their lives. So we weren’t looking for the donor to be actively involved during their childhood. There’s no doubt in my daughters’ minds or in mine that I’m their father. We share a relationship borne of bandages for scuffed knees, bedtime stories, and piggyback rides in the park. I treasure this. Even though I couldn’t father them, I’m a father after all. And I’ll admit that I’ve cried with the joy of that, too. But someday they may need to know the other half of their biological and genetic history; and maybe they’ll want to meet the donor. Maybe someday the donor will want to meet these wonderful people he helped to create.

As for if and when we meet or discover any half-siblings that share the same donor, what role we’ll play in each other’s lives, and what all of that will mean... we’ll figure it out when we get there. Until then, the Southwestern Ontario Donor Conception Support Network meets in London and Toronto five times a year. Please visit our web-page at www.donorconception.com for more information

WINTER/HIVER 2013-14 • Creating Families

Patient’s Perspective

by Charmaine Graham “Two ovaries for sale, slightly used, absolutely FREE.” I once posted that status on my Facebook page. Many of my friends laughed at my update, thinking me hilarious, but my infertile friends ... well, they “got it” and loved me all the more for being honest, for making them laugh, and for bringing my frustrations out in the open in a humorous manner. We all know that infertility is painful. The gut-wrenching knowledge of our inability to procreate is a cloud that descends and

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overwhelms the best of us. Last week, as I looked around the table and listened to my friends during a meeting of our local infertility support group, I was amazed at how much life and living was being lost to the process of trying to conceive. I watched this courageous group of people sitting at our table – the newcomers who weren’t ready to talk yet for fear of becoming a total mess in front of complete strangers, and the veterans of the infertility experience who have already shed their tears and have come to terms with the harsh truth that, after years and years of procedures, nothing will give them the child they have so painfully sought. Sadly, I listened to the stories of a few whose path through infertility had actually ruined their marriages. But I noticed something else that was quite remarkable among this courageous group of individuals, something that could be both seen and heard: humour.

Personally, during my infertility struggles, I often used humour to lighten my psychological load. When I would return to work after an IVF cycle, people would ask where

During my infe rtility struggles, I oft en used humour to ligh ten my psychological load. When I w ould return to work after an IVF cycle, p eople would ask whe re I had been, and I would reply, “I was m aking babies in a Pe tri dish.”

Patient’s Perspective I had been, and I would reply, “I was making babies in a Petri dish.” I remember during one cycle, my family went out for dinner to celebrate a birthday, and I asked my brother if I could have a sip of his beer. He was a little concerned that a sip of beer was against the “IVF code of proper conduct,” but he relented when I glared at him and reminded him that my entire life seriously sucked and I didn’t need his guilt trip. When he passed that beer over to me, I raised my glass to him and said, “Here’s to making three-headed babies!” We both cracked up, laughing hysterically. It felt good to laugh. When it came to my own fertility issues, I also often used humour as a way to gauge my outside world. I wanted to find out whether the people who always asked me questions about “when I was going to have a baby” would feel just as free to involve themselves in conversations or comments about my infertility. I wanted to find out whether they were going to laugh or be uncomfortable with me. Often, the humour I used to answer questions about my infertility was lost on my fertile friends. Quite regularly, people responded by giving me a side glance that radiated the “I have no idea what the hell is going on in her head” look, and they quickly changed the subject. They ditched the conversation and I didn’t have to deal with them anymore. An added benefit was that my whacky comments also prevented these people from ever bringing up the subject again! And sometimes, delightfully so, someone would laugh at my jokes and respond to my humour with curious questions. Thanks to the fact that our laughter had broken the ice, I felt quite comfortable in answering these questions. Most of the time, though, when I used humour, I didn’t care about the outcome. I was in survival mode. To be blunt, the humour I

personally invested in the outcome as we are. For instance, while your fertility clinic’s purpose is to help you get pregnant, in many cases, infertility patients become just another face in a long line-up of patients to be dealt with every day, and the staff or medical professionals are merely completing the specific requirements of ultrasounds and exams, applying general strategies as part of their job. No doubt they have a passion for what they do, but I never felt as though the professionals involved in my infertility treatments were ever as invested in my outcome as I was.

The humour I used did one of two things: it made people laugh, and thus made them more comfortable around me; or it threw people off kilter so they couldn’t say something hurtful or stupid. My humour kept me safe. used did one of two things: it made people laugh, and thus made them more comfortable around me; or it threw people off kilter so they couldn’t say something hurtful or stupid. My humour kept me safe. Emotional safety is so important during infertility. Nothing can be as valuable as having a safe group of like-minded people to share our struggles with. But in some arenas, the people involved in our infertility journeys aren’t like-minded or aren’t as

For that reason, I also found the infertility clinic to be a valuable place for my humour. I used humour to get me through the worst of humiliations of my life, such as regularly being invaded with the internal ultrasound to check for uterine lining thickness, or the follicles I was growing during stimulation as a way to survive. I hated those exams. I felt embarrassed lying there in stirrups in front of a group of medical students (the joys of my clinic being part of a teaching hospital!). I would suggest they offer pedicure services while I was being checked out, or I would make funny jokes about their lack of entertaining reading materials in the waiting rooms. Sometimes I would ask whether they had an esthetician on staff for bikini waxing, since I was already exposed. I wanted these people to help me, and I agreed to such treatments and humiliations for the greater purpose of getting what I wanted, but I hated every minute of it. Not only did I have to suffer being infertile, but I also had to suffer going through the treatments as well. For me, cracking jokes became a vital part of staying sane. Humour also came in handy when I needed a one-liner to put a stop to a conversation when continuing with it would just be way too personal. I like to believe that people are generally very kind

WINTER/HIVER 2013-14 • Creating Families

Patient’s Perspective I felt embarrassed lying there in stirrups in front of a group of medical students (the joys of my clinic being part of a teaching hospital!). I would suggest they offer pedicure services while I was being checked out. and want to help those who are hurting around them, but infertility is still a taboo subject, or one that’s just too personal to share. In a society where open discussions about infertility are just starting to become mainstream, there is a lot of misinformation floating around, and people come up with some ridiculous platitudes. I couldn’t handle the stupid platitudes or the stories about someone’s twice-removed cousin who got pregnant by having sex in a hot

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tub. So I would put a stop to those people and their anecdotes with a quick shot back. I used my humour to manage dashed hopes, failed pregnancy tests, and the loss of my dreams during miscarriages. But make no mistake: I also used humour to make myself laugh. Fully comprehending the reality of infertility was almost unattainable to me at times. The pain I felt

was so immense, I just needed to laugh because the alternative was horrible, unthinkable. Mind you, on occasion, that humour became caustic. What is caustic humour? Caustic humour is designed to burn and corrode, and it involves the clever use of language to convey biting, insulting, or sometimes even cruel remarks, making it easy to cross the line from healing to hurtful. I used caustic

Patient’s Perspective humour to keep people away. I used it to berate women who I saw yelling at their children in the grocery store. I used it to deal with people who made me feel ridiculous for my sadness. I used it to survive. Humour is great, but when it gets “dark,” it can be concerning, too. When does that darkness go from funny to something one actually believes? Let me give you an example. I used to tell myself that even if I couldn’t make my body do what I had always believed was my absolute given right, there still had to be a way. I used to joke to myself that even if I couldn’t have a child biologically, I could always pick one up at the mall, and if I ran fast enough, that baby might even come with a stroller. Now, you might read that and think I’m horrible, but pain will drive us to think the unthinkable.

of those IVF veterans who hated the world, who hated pregnant women, who hated life.

I used my hum our to manage dashed hopes, failed pregnan cy tests, and the loss of my dre ams during miscarr iages. But mak e no mistake: I also used humour to make myself la ugh. Fully comprehendin g the reality o f infertility was almost unattain able to me at times .

At times and in some dark spaces my humour made me feel better, but it wasn’t exactly healthy thinking either. What I found fascinating was that when I shared a dark joke with my very trusted infertile friends, they ALL admitted they had thought the same thing! We laughed at ourselves, at our sameness, at our black sense of survival, and we reveled in the realization that we were not alone. BUT, we also kept our blackness amongst each other, and this gave us a safe place for our pretty dark thoughts. Caustic humour has its place, absolutely, but it has to be with the right (trusted) people, in the right place, at the right time, and in moderation. I was always aware that

if I bought in too deeply with caustic humour, my laughter would turn into anger again, and I’d had enough of that already. My humour needed to be used to help me reach beyond my anger, not as a justification to become even angrier. In addition to wanting to be a mother, I also wanted simply to be happy. If being a mother was not going to be part of my future, I knew I didn’t want to be left with nothing but anger. I didn’t want to be one

The other night at our infertility support group, I listened intently to each person talking about their specific circumstances, their individual struggles, and their incredible drive to find the answer to make their treatments – AND THEIR LIVES – work. A lot of our time together is spent in sharing not only our experiences and feelings, but also in discussing alternative treatments and approaches, such as acupuncture, herbal medicines, osteopathy, chiropractic treatments, hot yoga, meditation, and the power of positive thoughts. But during our conversation, I realized one other thing that encouraged me to write this article for you today: I realized that humour stands out as one of the most beneficial tools to help a person cope through infertility – and, best of all, it’s FREE! I came home from that meeting, turned on my laptop and searched for a link to an online blog one of the awesome people in our group had recommended. It was called “999 reasons to laugh at infertility” (www.999reasonstolaugh.com). On my first hit, my eye lit on this little gem: Number #784: “Crying hysterically burns calories.” Read on: Thinking about going to the gym to lose weight? Think again because infertiles have adopted the “crying hysterically to burn calories” diet! According to some (unreliable) websites, crying hysterically may actually help you

WINTER/HIVER 2013-14 • Creating Families

Patientâ&#x20AC;&#x2122;s Perspective 1. Commit to crying at least twice an hour for a minimum of four days a week. 10 CALORIES. 2. To maximize calories, flail your arms in a circular and hysterical motion; throw yourself on the ground and blow your nose a lot to burn extra calories. 15 CALORIES.

Forget those squats; you might be able to burn the same amount of calories simply by looking at a negative pregnancy test and crying for hours! burn calories! Wow. Another great reason to love infertility! Forget those squats; you might be able to burn the same amount of calories simply by looking at a negative pregnancy test and crying for hours! How does the diet work? Itâ&#x20AC;&#x2122;s simple.

3. Make sure to breathe. Hyperventilating during emotional breakdowns will increase your heart rate. 10 CALORIES. 4. Release all bodily fluids in excess to help burn excess pounds. Try having severe runny nose and big tears. Note, large amounts of snot and nasal drippage will release any excess liquid. 30 CALORIES. 5. Keep it simple. Yelling, screaming and throwing things will exercise muscles. 30 CALORIES. 6. Walk to the bathroom and check the toilet paper at least 15-25 times a day. 25 CALORIES. 7. Make healthier food selections like crying in the organic section of the grocery store and throwing fruits, vegetables, whole grain cereals, low-fat products, and skinless poultry. 30 CALORIES.

Mindful Fertility Mind-Body Fertility Treatment Stress can reduce your chances of conception. Scientific research shows that women who used mind-body medicine conceived significantly faster than others ...

8. Avoid throwing foods that are high in fat and sugars. 5 CALORIES. 9. Have a variety of emotional breakdowns in your nutrition plan. Start by crying in a fitness class or during a fertility clinic appointment.Â 40 CALORIES. 10. Have realistic goals. Donâ&#x20AC;&#x2122;t just toss your negative pregnancy stick in the garbage. Try to rip it in half or hurl it through a glass window. 40 CALORIES. The â&#x20AC;&#x153;crying hysterically to burn caloriesâ&#x20AC;? diet really works! Just ask any fertility-medicated and bloated infertile. Admit it: after reading this, youâ&#x20AC;&#x2122;re laughing arenâ&#x20AC;&#x2122;t you?Â Doesnâ&#x20AC;&#x2122;t it feel good?

About the Author Charmaine Graham lives in Komoka, Ontario, with her husband Jim and their two domestically adopted children, Macarthur and Madeline.Â In 2005 Charmaine founded AdoptionProfiles.ca. Charmaine spends her extra time volunteering at the local family shelters, volunteering for multiple dog rescues, and is on the working board for the Childrenâ&#x20AC;&#x2122;s Health Foundation and the Graham Family EcoPark.Â Moved by her compassion towards people who are suffering under the various issues that accompany infertility, Charmaine coordinates infertility support groups and speaks on the subject of adoption in order to help people in Canada and the United States work towards realizing their dreams of parenting.Â She is always available if anyone suffering from infertility needs a listening ear. She can be reached at info@adoptionprofiles.ca.

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WINTER/HIVER 2013-14 â&#x20AC;˘ Creating Families

Primary Ovarian Insufficiency How to Deal With the Diagnosis Consulting early is important, as effective treatment is available. by Patricia Monnier, M.D., Ph.D., Reproductive Endocrinologist Primary ovarian insufficiency (POI) is another name for premature ovarian failure (POF), the symptoms of which appear before the age of 40. In its classical form, POI manifests itself as absent menses. This pathology is relatively common as between 1% and 3% of women under 40, and 0,1% of women under 30, are affected.1-3

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In these patients, ovarian dysfunction (if clinical signs are due to certain genetic or auto-immune anomalies) or a loss of ovarian follicles (due to genetic anomalies or toxic environmental causes) is observed. However, in numerous cases no cause is identified – it is then considered idiopathic POI. This article will not deal with the

particular context of ovarian insufficiency brought on by cancer treatment.

An often late diagnosis If the patient has never had a period, it is considered primary amenorrhea. The term

secondary amenorrhea is used when periods stop after spontaneous puberty. Only rarely do menstruations stop suddenly. Most often, amenorrhea is preceded by menstrual disorders, such as very short or very long cycles, or loss of blood outside menses. The diagnosis may be established as well during investigations for infertility (for example when the response to ovarian stimulation is insufficient and unexpected), or during check-ups related to repeated miscarriages.4 Ovarian dysfunction is accompanied by insufficient or absent estrogenic secretion. Unlike physiological menopause, estrogenic deficiency produces irregular symptoms where hot flashes are prevalent, while other classical menopausal symptoms (dry skin and mucous membranes, urinary problems, etc.) are less frequent.5 A revealing survey of 48 young patients with secondary amenorrhea has shown that over half the women consulted three or more physicians before a diagnosis was made. Moreover, while 84% consulted during the year which followed their menses disorders, 25% of patients waited over five years before obtaining a diagnosis.6 Because so many young women have a hectic lifestyle, doctors are quick to blame stress for menstrual disorders of women in this age group. Stress is an easy culprit! It is necessary to keep in mind that POI is responsible for 4 to 18% of cases of secondary amenorrhea.7 Moreover, in addition to fertility problems associated with POI, a woman diagnosed with premature ovarian failure who is not prescribed replacement hormone therapy runs a higher risk of osteoporosis8, 9 and cardiovascular disease.10, 11 This is why an early diagnosis allows for a therapeutic strategy choice that best suits the patient’s needs.

Announcing the diagnosis

The diagnosis brings about a strong emotional shock, as POI is totally different

from physiological menopause.6, 12-14 Indeed, patients know that physiological menopause occurs when a woman is about 50 years old, often preceded by a transition period called perimenopause. Patients who are told they suffer from POI have not had a preparatory period.

misunderstandings due to communication failure.

This devastating effect may be explained in several ways. First, by the psycho-social image of menopause in our societies. The biomedical model of menopause, with its estrogen deficit, is closely associated with aging. With POI, vasomotor symptoms (hot flashes, night sweats) are interpreted as signs of ageing rather than signs of estrogen deficiency. Patients feel alienated from themselves, old in their minds even though the mirror reflects the image of a young

- Firstly, you should take the time to meet with your practitioner for a consultation during which he/she can give you an overview of your situation. You should be able to express your emotions. Too often a diagnosis announced over the phone, on your work premises, prevents this.16 You then run the risk of not being understood by your physician, of being considered "a diagnosis rather than a person," as if the doctor did not realize the repercussions of

If you are suffering from POI, the words used when announcing the diagnosis are very important and several precautions must be taken:

Between 1% and 3% of women under 40, and 0,1% of women under 30, are affected. woman. In several studies women explain how, upon receiving the diagnosis, they felt that part of their life potential had left them, and as if they had been told of a close friend’s passing. In response to this diagnosis women go through a full grieving process : denial, anger, solitude, isolation, depression, self-depreciation, guilt feelings, jealousy and resentment.15 Moreover, in addition to meaning the possible end of their fertile years, the word menopause is associated with loss of femininity and seductive powers, something very difficult to accept for patients who are young by definition. The diagnosis may also affect family and friends. Sexual disorders may ensue. For this reason it is important that the patient be accompanied by her partner during medical appointments to avoid aggravating an already stressful situation by possible

the diagnosis nor its emotional significance.14 Taking this time is essential for you to transition from a state of incomprehension, where you feel you are a "victim," to a state of adaptation. - The second thing you should keep in mind is that POI doesn’t inevitably sentence you to infertility. In the medical community, the terms "premature menopause" are increasingly being replaced by expressions such as "primary ovarian insufficiency", "premature ovarian dysfunction" or "premature ovarian failure".17,18 These terms minimize the negative connotation of the word "menopause," allow for some hope for the future and are particularly well suited to clinical cases without an obvious cause, because ovarian function is highly unpredictable in these contexts. Indeed, it is very difficult to determine an individual prognosis for the

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regular physical exercise as well as a balanced diet high in calcium and vitamin D and low in fat. If you are a smoker you must quit – we have known for decades that smoking is associated with earlier menopause.19 Hormone replacement therapy is also a must as oestrogens play a major role in the preservation of bone mass. The speed of bone loss varies over time.20 Its physiological onset occurs around the age of 30 and it accelerates at menopause: while it is quicker in the two to three years following menopause (3-5%/year), it slows down afterwards (1-2%/year in the 5 to 10 subsequent years). Moreover, in cases of very early POI, the patient may not have had time to build an adequate bone mass, which normally peaks at around 20 years of age. Several studies have shown that patients have already experienced bone loss (ostoepenia) by the time they consult for POI.8, 21

Over half of the patients consulted three or more physicians before a diagnosis was made.

resumption of ovarian activity. A pregnancy may occur in 5 to 10% of patients, sometimes long after the diagnosis was pronounced.17

- The third precaution you should take is to protect yourself against the feeling of isolation you may experience by consulting other information resources. In this age of Internet, there are numerous opportunities to communicate with other patients in a similar situation (http://POFsupport.org).

Planning your treatment As soon as the diagnosis has been established, your physician should plan the follow-up. Indeed, this news marks the beginning of long term medical care. 1. Fight consequences of oestrogenic depletion on your general health Since POI raises the risk of osteoporosis and cardiovascular disease, in all cases women should adopt a healthy lifestyle involving

Given the current debate on hormone replacement therapy for physiological menopause, you may have concerns over the possible risk of cancer. To be clear, the hormone treatment in this case aims at compensating for the failure of an organ – the ovary – just as insuline is prescribed to young diabetics to make up for their failing pancreas. It is recognized that the treatment should be continued until the physiological age of menopause – about 50.22 You can then decide if you wish to continue with the hormone treatment beyond that limit. In some cases pregnancies have been reported subsequent to such treatment, even though randomized studies suggest that it is not effective for conceiving. Consequently, if you absolutely do not wish to become pregnant, it is best to avoid treatment that artificially recreates menstrual cycles through the intake of oestrogen and then progesterone. If there are no contraindications, an oral contraceptive is probably a better option for a woman who does not wish to become

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pregnant, for two reasons: 1) this avoids undesired resumption of the reproductive ovarian function and 2) helps with the reaction to the diagnosis by "normalizing" the everyday life of the young woman who will thus take an oral contraceptive like many of her friends. When grief with the diagnosis persists, androgenotherapy might be beneficial (masculinizing effects may be avoided with a proper dose), however this treatment has not been sufficiently evaluated, especially in the long term.23, 24 2. What to do if you wish to become pregnant? As POI affects young women by definition, a desire to become pregnant is often what brings the patient to the clinic in the first place. The pre-conception check-up If you wish to become pregnant, the cause of POI must be taken into consideration. If there is a family history of a serious disease, a genetic consultation is essential prior to any treatment in order to gauge the risks of transmitting the disease to the future child in the event that the patient’s

oocytes may still be retrieved (for example in cases of a Turner syndrome or a premutation of the FMR1 gene). Should in vitro fertilization be considered, a preimplantation genetic diagnosis may be suggested to limit the risk of transferring sick embryos into the uterus.25 In some cases the pregnancy presents a risk of possibly severe complications; a consultation for a high-risk pregnancy is then advised. This will allow you to gather information about possible complications and to receive explanations on specific monitoring elements that will be offered to you.

Treatment options Therapeutic options are to be discussed according to your medical history and your age at the time of diagnosis. To date, attempts to restore ovarian function have not proven their effectiveness. Several approaches have been experimented with. The first one hypothesizes that a normalization of FSH (follicle-stimulating hormone) could make the ovary functional again. From this perspective, a hormonal treatment would be appropriate. Most of

the pregnancies reported in the medical literature have occurred under hormone replacement therapy. In this context, natural estrogen and progesterone should be used to avoid any side effects in the fœtus, especially the risk of masculinization of a female fœtus. How this treatment actually results in a pregnancy has not been clearly defined. The second approach is based on making up for ovarian insufficiency by administering high doses of exogen gonadotrophins. No controlled studies are currently available to recommend this type of treatment. The third approach stems from the notion that if POI is caused by an underlying autoimmune disease, an immunosuppressant treatment could favour an ovarian response to endogen or exogen gonadotrophins. Patients suffering from an autoimmune disease produce antibodies which disrupt normal ovarian function. The difficulty lies in establishing the diagnosis. Moreover, in many studies ovarian failure without a known cause is confused with clearly autoimmune pathologies. No randomized research has

WINTER/HIVER 2013-14 • Creating Families

Because so many young women have a hectic lifestyle, doctors are quick to blame stress for menstrual disorders of women in this age group. Stress is an easy culprit!

offered proof that immunosuppressant treatment (corticotherapy) is truly efficient. Randomized clinical trials which would allow for accurate assessment of this therapeutic approach are currently lacking.26 Most often, the only solutions are adoption or oocyte donation. Indeed, POI represents 60% of the indications of egg donation.27 In the latter instance, results are excellent in terms of achieving a pregnancy and typically superior to those of standard IVF. 3. Watch your emotional state Harlow et al28 have shown that medically treated depressions are twice as common in women who undergo POI than in women who go through menopause at the usual age. In a way, these patients lose control over their bodies. An extra element is added to the picture: not knowing the cause of their problem raises their level of anxiety. According to one study, patients with unexplained sterility present a higher level of anxiety than women whose sterility has been proven to have an organic cause.29 These various factors make the patient

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suffering from idiopathic POI a candidate for depression. A psychological assessment is systematically recommended, due to the high prevalence of severe anxiety and depression. 4. Reevaluate the situation regularly This monitoring should be adapted to the cause of POI. For instance, if you are affected by Turner syndrome, the cardiovascular follow-up should be more attentive than it would otherwise be. Generally speaking, a yearly follow-up is advised. Such follow-ups allow for the monitoring of hormonal treatment to ensure that it is well tolerated and that the patient is compliant. It also allows for detection of possible signs of another endocrine disorder or of another autoimmune disease – in particular hypothyroidism, adrenal insufficiency or diabetes. They also present an opportunity to evaluate the emotional health of the patient.

insufficiency, you will need special medical care. The medical approach should be thorough. The diagnosis should be announced with special tact during a consultation which should allow you to immediately contemplate the future based on a treatment suited to your needs and preference. This way, however stunned you may be by a POI diagnosis, you can still envision a constructive future. Even if you do not wish for a pregnancy, you should be aware of the consequences of a reduction in oestrogen secretion and of the benefits of hormone replacement therapy. If you do wish to become pregnant, regular followups will allow for the treatment protocol to be tailored to your needs, and will allow you to create a relationship based on trust between yourself and your physician. The quality of communication will help you rise to the challenge when the diagnosis is announced. References: 1 Coulam CB, Adamson SC, Annegers JF. Incidence

The Final Word

of premature ovarian failure. Obstet Gynecol. 1986 Apr;67(4):604-6.

If you present with primary ovarian

among women attending a network of menopause

2 Premature ovarian failure: frequency and risk factors

clinics in Italy. Bjog. 2003 Jan;110(1):59-63. 3 Rebar RW. Premature ovarian failure. Obstet

13 Farrell E. Premature menopause. 'I feel like an alien'. Aust Fam Physician. 2002 May;31(5):419-21.

Gynecol. 2009 Jun;113(6):1355-63.

14 Orshan SA, Furniss KK, Forst C, Santoro N. The

4 Cameron IT, O'Shea FC, Rolland JM, Hughes EG,

lived experience of premature ovarian failure. J Obstet Gynecol Neonatal Nurs. 2001 Mar-Apr;30(2):202-8.

de Kretser DM, Healy DL. Occult ovarian failure: a syndrome of infertility, regular menses, and elevated follicle-stimulating hormone concentrations. J Clin Endocrinol Metab. 1988 Dec;67(6):1190-4.

6 Alzubaidi NH, Chapin HL, Vanderhoof VH, Calis KA, Nelson LM. Meeting the needs of young women with secondary amenorrhea and spontaneous prematureovarian failure. Obstet Gynecol. 2002;99(5):720-5. 7 Aiman J, Smentek C. Premature ovarian failure. Obstet Gynecol. 1985 Jul;66(1):9-14. 8 Uygur D, Sengul O, Bayar D, Erdinc S, Batioglu S,

Lambalk CB, Braat DD, van Kasteren YM, et al. Decreased androgen concentrations and diminished general and sexual well-being in women with premature ovarian failure. Menopause. 2008 JanFeb;15(1):23-31.

16 Groff AA, Covington SN, Halverson LR, Fitzgerald OR, Vanderhoof V, Calis K, et al. Assessing the emotional needs of women with spontaneous premature ovarian failure. Fertil Steril. 2005 Jun;83(6):1734-41. 17 Davis M, Ventura JL, Wieners M, Covington SN, Vanderhoof VH, Ryan ME, et al. The psychosocial transition associated with spontaneous 46,XX primary ovarian insufficiency: illness uncertainty, stigma, goal flexibility, and purpose in life as factors in emotional health. Fertil Steril. 2010 May 1;93(7):2321-9.

9 Nelson LM. Clinical practice. Primary ovarian insuf-

accurate term for premature ovarian failure. Clin Endocrinol (Oxf). 2008 Apr;68(4):499-509.

Schouw YT. Postmenopausal status and early menopause as independent risk factors for cardiovascular disease: a meta-analysis. Menopause. 2006 MarApr;13(2):265-79. 12 Boughton MA. Premature menopause: multiple disruptions between the woman's biological body experience and her lived body. J Adv Nurs. 2002 Mar;37(5):423-30.

25 Martin JR, Arici A. Fragile X and reproduction. Curr Opin Obstet Gynecol. 2008 Jun;20(3):216-20. 26 Fenichel P, Sosset C, Barbarino-Monnier P, Gobert B, Hieronimus S, Bene MC, et al. Prevalence, specificity and significance of ovarian antibodies during spontaneous premature ovarian failure. Hum Reprod. 1997 Dec;12(12):2623-8. 27 Letur-Könirsch H, Martin-Pont B, Thépot F, Fénichel P. Bilan de l'activité 1999 du don d'ovocytes en France. Reproduction Humaine et Hormones. 2001;XIV:453-6. 28 Harlow BL, Cramer DW, Annis KM. Association

ficiency. N Engl J Med. 2009 Feb 5;360(6):606-14.

11 Atsma F, Bartelink ML, Grobbee DE, van der

py. Best Pract Res Clin Endocrinol Metab. 2003 Mar;17(1):165-75. 24 van der Stege JG, Groen H, van Zadelhoff SJ,

18 Welt CK. Primary ovarian insufficiency: a more

EW, Eijkemans JC, Banga JD. Age at menopause as a risk factor for cardiovascular mortality. Lancet. 1996 Mar 16;347(9003):714-8.

23 Davis SR, Burger HG. The role of androgen thera-

a practical approach to grief and bereavement. Ann Intern Med. 2001 Feb 6;134(3):208-15.

Mollamahmutoglu L. Bone loss in young women with premature ovarian failure. Arch Gynecol Obstet. 2005 Nov;273(1):17-9.

10 van der Schouw YT, van der Graaf Y, Steyerberg

Premature ovarian failure. Endocrinol Metab Clin North Am. 1998 Dec;27(4):989-1006.

15 Casarett D, Kutner JS, Abrahm J. Life after death:

5 Rebar RW, Erickson GF, Yen SS. Idiopathic premature ovarian failure: clinical and endocrine characteristics. Fertil Steril. 1982 Jan;37(1):35-41.

22 Kalantaridou SN, Davis SR, Nelson LM.

19 Jick H, Porter J. Relation between smoking and age of natural menopause. Report from the Boston Collaborative Drug Surveillance Program, Boston University Medical Center. Lancet. 1977 Jun 25;1(8026):1354-5. 20 Pouilles JM, Tremollieres F, Bonneu M, Ribot C. Influence of early age at menopause on vertebral bone mass. J Bone Miner Res. 1994 Mar;9(3):311-5.

of medically treated depression and age at natural menopause. Am J Epidemiol. 1995 Jun 15;141(12):1170-6. 29 Bringhenti F, Martinelli F, Ardenti R, La Sala GB. Psychological adjustment of infertile women entering IVF treatment: differentiating aspects and influencing factors. Acta Obstet Gynecol Scand. 1997 May;76(5):431-7.

21 Leite-Silva P, Bedone A, Pinto-Neto AM, Costa JV, Costa-Paiva L. Factors associated with bone density in young women with karyotypically normal spontaneous premature ovarian failure. Arch Gynecol Obstet. 2009 Aug;280(2):177-81.

About the Author Dr. Patricia Monnier is an obstetriciangynecologist specialized in infertility at the McGill Reproductive Centre at the McGill University Health Centre Montreal, and an Associate Professor at the Department of Obstetrics and Gynecology of McGill University Montreal. She holds a Ph.D. in cellular biology and immunology from the University of Nancy, France, and her research projects focus on the impact of environment on reproductive health.

WINTER/HIVER 2013-14 • Creating Families

Qu’est-ce qu’une accompagnante a la conception –

DOULA DE FERTILITÉ OU D’INFERTILITÉ ? Que peut-elle offrir aux couples qui esperent un bebe ? par Katia Petitclerc

Notre parcours en procréation médicalement assistée a débuté en octobre 2011, alors que nos tentatives de concevoir naturellement notre premier enfant, amorcées en 2008, semblaient vaines. À ce moment, mon conjoint et moi avons littéralement plongé dans une aventure que nous étions loin d’imaginer aussi éprouvante, physiquement et psychologiquement.

Les traitements ont mis notre couple à rude épreuve. Il s’est créé une sorte de malaise au sein de nos familles, de nos cercles d’amis et de nos milieux de travail. Nous nous sommes rapidement sentis isolés et laissés à nous-mêmes, enchaînant les rendez-vous, les tests et les piqûres, sans trop savoir ce qui allait suivre et ni connaître les ressources disponibles. Après plusieurs inséminations artificielles, nous avons choisi de nous lancer dans les traitements invasifs qu’implique la fécondation in vitro. C’est à ce moment, à l’hiver 2012, que j’ai découvert l’univers des doulas… Qu’est-ce qu’une Doula – accompagnante à la naissance ? Mot d’origine grecque, « doula » signifie « esclave ». Traditionnellement, il s’agissait d’une femme « au service » d’une autre femme et qui, durant l’accouchement, veillait à son confort, proposait des moyens pour aider à l’avancement du travail, offrait son aide durant les relevailles, et ainsi de suite.

Créons des familles • WINTER/HIVER 2013-14

Ce rôle était souvent joué par une proche parente : mère, sœur, cousine… Aujourd’hui, au Québec, l’accompagnante à la naissance est toujours au chevet de la parturiente, mais elle offre également des cours prénataux, aide le futur papa à être davantage en confiance et outillé au moment de la naissance, offre des services et ateliers en période postnatale, etc. Si la quasi-totalité des accompagnantes à la naissance ont suivi une formation de base, plusieurs choisiront de parfaire leurs connaissances sur différents sujets touchant à la périnatalité : • Utilisation du ballon de naissance ; • Aide à l’allaitement ; • Herboristerie de la femme enceinte et allaitante ; • Atelier de portage ; • Massage de la femme enceinte et en travail… Chacune y va en fonction de ses intérêts pour garnir son bagage personnel et professionnel! Toutefois, ce qui fait véritablement la valeur inestimable d’une accompagnante demeure sans contredit sa capacité d’être à l’écoute des couples qu’elle accompagne, de les informer des différents choix qui s’offrent à eux et ce, de la grossesse jusqu’à la naissance et au-delà. Elle les guide afin qu’ils exploitent leurs propres outils et ressources leur permettant de rendre l’expérience de l’accouchement à leur image, qu’ils en conservent un sentiment de satisfaction et que l’événement soit vécu le plus positivement possible. Je vous imagine lisant ces lignes et vous demandant pourquoi, alors que je découvrais les joies des injections quotidiennes en vue de ma première ponction ovarienne, j’ai choisi de me joindre à ces femmes qui assistent à l’émergence même de la vie? Qu’est-ce qui pouvait bien m’inciter à ce point à vouloir

Aujourd’hui, l’accompagnante à la naissance est toujours au chevet de la parturiente, mais elle offre également des cours prénataux, aide le futur papa à être davantage en confiance et outillé au moment de la naissance, offre des services et ateliers en période postnatale. accompagner des femmes vivant un rêve qui pour moi demeurait inatteignable, celui de porter et de donner la vie ? Je vous répondrai tout bêtement qu’à ce moment je l’ignorais moi-même. J’étais simplement attirée par cette vocation. Je voyais une telle grandeur d’âme, une capacité d’écoute, une unicité et un esprit si ouvert chez ces bouts de femmes que j’ai souhaité découvrir leur univers. Si jamais je me trompais et que ce monde n’était finalement pas pour moi, je me disais que le bagage théorique acquis allait sans doute me servir pour mes propres grossesses et accouchements futurs ! Par la suite, plus j’ai découvert les facettes de ce métier passionnant, plus j’ai pris conscience que le combat mené par

plusieurs couples qui mettraient leur enfant au monde était semblable, de plusieurs points de vue, à celui vécu par les couples se questionnant sur leur fertilité ou éprouvant des difficultés à concevoir : • Le manque d’informations (ou des informations souvent contradictoires) ; • Le manque de soutien et de ressources ; • Les nombreuses questions et sujets tabous ; • Chaque membre de la famille qui y va de son conseil ou dépeint sa propre expérience ; • L’appréhension, la crainte de l’inconnu ;

WINTER/HIVER 2013-14 • Creating Families

Pourquoi un couple désirant se lancer dans l’aventure d’une grossesse ou éprouvant des difficultés à concevoir ne pourrait-il pas lui aussi bénéficier des services d’une personne qui serait disponible et à l’affût des ressources existantes, qui accompagnerait le couple et l’aiderait à y voir plus clair lorsque bébé se fait attendre? • Un intérêt grandissant pour les alternatives à ce qui est proposé par la médecine moderne ; • Une vision et un vécu différents pour l’homme et pour la femme ; • L’impression de perdre le contrôle de son corps et de sa vie ; • Le sentiment de n’être qu’un corps et que

les émotions ne sont pas prises en compte par le personnel hospitalier ; • L’impression d’être brimé dans son intimité, sa pudeur, son identité… Je me suis dit alors : pourquoi un couple désirant se lancer dans l’aventure d’une grossesse ou éprouvant des difficultés à concevoir ne pourrait-il pas lui aussi bénéficier des services d’une personne qui

Inc.

Aina Zhang « Un membre important de l'équipe de rêve de Céline Dion » - Le Journal de Montréal, 1er juin 2010

U Maîtrise en gynécologie (Chine) U Diplôme de médecine (MD) en médecines chinoise et occidentale (Chine) U Reconnue par l'Ordre des Acupuncteurs du Québec U Plus de 30 ans d'expérience clinique en médecines chinoise et occidentale U Acupuncture sur place pour les patientes de FIV des cliniques de fertilité 365 jours par année

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Créons des familles • WINTER/HIVER 2013-14

www.sinocare.ca

serait disponible et à l’affût des ressources existantes, qui accompagnerait le couple et l’aiderait à y voir plus clair lorsque bébé se fait attendre ? Une personne qui posséderait un certain bagage pour aider ces personnes à mettre toutes les chances de leur côté afin d’obtenir une grossesse naturelle. Parmi les outils utilisés : • Donner de l’information en lien avec l’alimentation et un bon régime de vie en général ; • Enseigner la méthode symptothermique pour mieux cibler la période fertile du cycle de la femme ; • Posséder et partager des connaissances en herboristerie, homéopathie, yoga, reiki… Également l’expérience ou, à tout le moins, la sensibilité nécessaire lui permettant de comprendre et d’accompagner un éventuel processus de procréation médicalement assistée. Cette réflexion m’a amenée à comprendre tout l’impact que cela aurait si chaque couple avait la chance d’avoir accès à une doula, dès la période de préconception. Non seulement le sentiment d’isolement serait beaucoup moins omniprésent, mais il leur serait d’autant plus facile d’obtenir des réponses à leurs questions, de connaître l’éventail des choix disponibles, d’avoir en main de la documentation sur la médication et les effets secondaires, les méthodes alternatives à la procréation médicalement assistée, etc. Plus je poursuivais ma formation, parallèlement à notre première tentative de FIV, plus je devenais convaincue de la pertinence de la présence d’une accompagnante à nos côtés. Par exemple, lorsque nous avons reçu notre premier appel d’une infirmière pour nous annoncer que nos embryons n’avaient pas survécu et qu’il n’y aurait pas de transfert, comme j’aurais aimé que nous puissions à ce moment avoir une personne

Lorsque nous avons reçu notre premier appel d’une infirmière pour nous annoncer que nos embryons n’avaient pas survécu et qu’il n’y aurait pas de transfert, comme j’aurais aimé que nous puissions à ce moment avoir une personne ressource, une ressource, une doula, disponible pour nous écouter, nous encourager et nous apprendre que cet essai ne comptait pas parmi nos trois essais subventionnés ; qu’elle prenne le temps de nous expliquer pourquoi le transfert ne pouvait avoir lieu ! Seulement le fait de savoir que nous avions accès à quelqu’un qui comprend et est prêt à nous écouter à tout moment aurait été d’un réel secours… Autre situation : notre premier test de grossesse négatif. Comment vous décrire le sentiment de vertige, d’impuissance et de colère qui nous a alors submergés? Ce moment douloureux où tout s’arrête, où les mots nous manquent, n’aurait-il pas été un peu adouci par la présence réconfortante d’une doula ? Il y a tellement de situations où avoir été accompagné aurait sans doute allégé chacune de ces épreuves… Dernièrement, le ministre de la Santé et des Services sociaux, le Dr. Réjean Hébert, lançait un appel à la population, incitant les organismes et individus interpellés par la question à rédiger un mémoire qui traiterait des enjeux du Programme de procréation assistée au Québec. J’ai sauté sur l’occasion pour participer à l’exercice, avec mes couleurs, et y soulever quelques questions

liant l’accompagnante aux couples infertiles. Voici un extrait de ce texte : […] C’est ainsi que me sont venus les questionnements suivants : Et si les couples éprouvant des difficultés à concevoir pouvaient également bénéficier de ce soutien, de cette écoute ? Si eux aussi avaient besoin qu’une personne, toujours la même, soit présente à leurs côtés pour apprivoiser chacune des nouvelles étapes, au lieu qu’elles leur bondissent dessus d’un seul coup et qu’ils n’aient personne avec qui en discuter ? Si la présence d’une Doula, lors de moments clés de la PMA, pouvait encourager les couples à se détendre, à faire face plus sereinement à la ponction ou au transfert d’un embryon ? Si elle pouvait les aider à démystifier le jargon scientifique, à faire la part des choses, alors que la toile du Web regorge d’informations de toutes sortes, de blogs, et de définitions pas toujours applicables pour chaque cas précis et même contenant des informations erronées ? Si elle devenait un filet de secours à l’annonce d’un nouveau test de grossesse négatif, une épaule sur laquelle s’épancher ? Le parcours serait-il moins ardu ? Les liens du couple seraient-ils davantage renforcés au lieu de s’affaiblir ? Y aurait-il plus de communication dans les familles sur ce sujet tabou, ainsi que

doula, disponible pour nous écouter, nous encourager et nous apprendre que cet essai ne comptait pas parmi nos trois essais subventionnés. dans les milieux de travail, les cercles d’amis ? Et si le fait d’être accompagné, outillé, en favorisant le choix éclairé, permettait de retarder le moment de recourir à la procréation médicalement assistée et de permettre d’abord de tout mettre en place pour favoriser une conception naturelle puis, le cas échéant, de favoriser un dénouement positif suite à un traitement de conception médicalement assistée ? Et lorsque le miracle se produit, ne deviendrait-il pas tout naturel que l’accompagnante poursuive un bout de chemin avec les futurs parents, qu’elle continue son travail de fée marraine auprès de la triade, qu’elle les aide à gérer toutes les émotions des moments passés à tenter d’accéder au rêve ? Car l’avènement d’une grossesse après le recours à la procréation assistée ne rime pas assurément avec grossesse de rêve et ne signifie

WINTER/HIVER 2013-14 • Creating Families

pas que les événements passés s’effacent d’un seul coup, comme si les épreuves n’avaient jamais eu lieu… Et si une accompagnante pouvait faire la différence sur la manière dont est vécue l’infertilité ? Pourrions-nous assister aux mêmes constatations que lors d’un suivi de grossesse, à savoir moins d’interventions médicales (et donc de coûts) impliquant des complications possibles, moins de désarroi au sein du couple, de dépressions, de sentiment d’impuissance et d’ignorance? Pourrait-on aussi semer, graduellement, de toutes petites pensées sur les facteurs de risque pouvant conduire à l’infertilité ? Serait-il plus facile pour les couples de vivre le jour fatidique où, finalement, l’option choisie est d’envisager une vie sans enfant ?

Je suis loin d’être la seule ou la première à avoir fait le lien entre le métier de doula et l’accompagnement des couples espérant une grossesse.

Cette certitude, je la ressens toujours maintenant, à l’aube de démarrer les activités de ma petite entreprise, Kate, Doula! dont la devise est Dar A Luz, expression espagnole signifiant donner la lumière, mais également donner naissance. En l’entendant pour la première fois, il m’est apparu évident que la formule Dar A Luz devait faire partie de ma pratique, puisque ces trois mots résument parfaitement l’esprit que je souhaite lui donner et ce que je désire apporter aux couples qui croiseront ma route : leur permettre d’avoir en main des outils pour prendre des décisions et faire des choix éclairés, philosophie à la base même de l’accompagnement à la naissance.

créneau de l’accompagnement attirait quelques-unes de mes consœurs, soit parce qu’elles-mêmes ou des proches éprouvent des difficultés à concevoir, soit parce que d’anciens clients, après une première naissance, ne parviennent pas à avoir d’autres enfants (infertilité secondaire). Nous tentons donc d’échanger sur nos connaissances et expériences respectives afin de rendre notre bagage encore plus complet et diversifié, car il est vrai que les formations en lien direct avec la conception et l’infertilité ne pleuvent malheureusement pas ! Une facette de notre travail étant d’accompagner des couples en deuil périnatal, plusieurs choisissent de suivre des formations plus précises en relation d’aide, animation de groupes de deuil, etc. Les outils qui y sont enseignés en sont autant qui peuvent être utilisés auprès des couples infertiles. En effet, qu’il s’agisse d’un couple pour qui l’espoir de concevoir naturellement a disparu, ou qui a vécu un échec de FIV ou une fausse couche précoce, un deuil sera à faire et une aide extérieure pourra s’avérer d’un grand secours.

Dans un autre ordre d’idée, je trouve important de mentionner que je suis loin d’être la seule ou la première à avoir fait le lien entre le métier de doula et l’accompagnement des couples espérant une grossesse. Je me suis aperçue que ce

Quant aux pratiques des accompagnantes en contexte d’infertilité ailleurs dans le monde, je peux seulement affirmer que les ressources semblent déjà plus abondantes aux États-Unis, selon les recherches que j’ai pu effectuer sur Internet. Tel que

Je n’ai pas à ce jour les réponses à ces questions, seulement le sentiment profond que l’accompagnement peut faire une différence, et je compte bien faire mes propres vérifications sur le terrain ! […]

précédemment mentionné, je n’ai rien inventé ! J’ai parcouru un article où il est écrit, en toute simplicité, que si les services d’une accompagnante vous intéressent, il s’agit de s’informer auprès de son médecin en clinique de fertilité pour être référé à cette professionnelle ! Il est par ailleurs précisé que les « Infertility Doulas » sont par contre moins nombreuses que les « Pregnancy Doulas »… Comme j’aimerais observer ces références dans les bureaux de nos médecins, généralistes et spécialistes ! Nous entendons parler de plus en plus d’accompagnement en fin de vie, à la naissance, en contexte de deuil (périnatal, membre de la famille) et de maladie grave… Est-il si étonnant de voir émerger l’accompagnement dans un contexte de préconception et d’infertilité ? Quelques ressources et références sur l’accompagnement à la naissance en général et l’accompagnement à la conception : Association québécoise des accompagnantes à la naissance : http://aqanqad.wordpress.com/pourquoi/ Baby Med : What is an Infertility Doula? http://www.babymed.com/blogs/summer-banks/ what-infertility-doula Bebo Mia : fertility, pregnancy and parenting http://bebomia.com/fertility-doulas/ By the moon: « I’m a fertility Doula » http://www.bythemoon.ca/2013/01/i-am-fertilitydoula.html Fertility Doula https://www.facebook.com/FertilityDoula Infertility Doula http://www.infertilitydoula.com/Doula/Welcome.html Kate, Doula! (Dar A Luz… Donner la Lumière!) www.katedoula.com (site en construction) www.facebook.com/DarALuzDonnerLaLumière Réseau québécois des accompagnantes à la naissance (RQAN) http://www.naissance.ca/

À propos de l’auteure Katia Petitclerc est accompagnante à la conception et à la naissance. Elle a fondé Kate, Doula ! (Dar A Luz… Donner La Lumière !)

WINTER/HIVER 2013-14 • Creating Families

Egg Donation What You Should Know by Michelle Flowerday Flowerday Law | Fertility & Family

Créons des familles • WINTER/HIVER 2013-14

Amanda spent several years coping with secondary infertility. When her son was one year old, she and her husband decided it was time to try for a second child. To Amanda’s surprise and disappointment, she suffered through several miscarriages after the birth of her son, including following two cycles of in vitro fertilization (IVF). After the most recent cycle, Amanda’s doctor found that her eggs were not viable, and were causing her to miscarry. In other words, Amanda and her husband would need to rely on donor eggs if they hoped to have a second child that was carried by Amanda. Amanda had several options to explore and consider with respect to donor eggs: anonymous donation, designated (or known) donation, and shared cycle donation. First, a primer on egg donation:

How Egg Donation Works In Canada, all potential egg donors must be screened for communicable diseases and meet certain criteria. Pursuant to the Assisted Human Reproduction Act (2004, c.2) (AHRA), Canada’s federal legislation dealing with third-party reproduction, donors must be at least 18 years of age. Some fertility clinics, however, institute their own internal guidelines. Some clinics prefer donors who are between the ages of 20 and 32 and who are nonsmokers, healthy, and prepared to help another couple have a

child. In addition, egg donors must have low follicle stimulating hormone (FSH) levels and an antral follicle count of six.

decreased the number of donors available to Canadians seeking donor eggs.) It is not illegal, however, to advertise for altruistic donations in online and print publications. Intended parents and potential donors should take care not to mention any payments in these advertisements.

Egg donors work with a fertility clinic to complete this screening process. Initially, the donor completes a thorough psychosocial exam as well as a physical exam to ensure that she meets federal criteria, is healthy enough to undergo the procedure, and that she has functioning ovaries. Once the screening process is complete and the clinic determines that the donor qualifies, she will finish a course of hormone treatments, including estrogen and progesterone, in order to coordinate her menstrual cycle with the intended mother’s cycle; that is, both women’s cycles need to be in tune in order to make the donation and transfer of fresh embryos successful. As their cycles are aligned, the donor will also be treated with hormones to stimulate the number of eggs she will produce in her monthly cycle – inducing what is sometimes called “superovulation.” Once the eggs are ready, an assisted reproductive technology (ART) procedure will be used to retrieve the eggs. Alternatively, the eggs may be retrieved from the donor and then preserved for a future transfer if the women’s cycles are not aligned. After the eggs have been retrieved, the intended mother will receive them through IVF, which involves fertilizing the eggs with the intended father’s sperm (or donor sperm, if that’s necessary), and then physically implanting the embryo in the mother’s uterus.

Defining Donation Options Egg, sperm, and embryo donation are all legal third-party reproduction options in Canada, but because “purchasing” eggs, sperm, and embryos is illegal, all donations must be altruistic. In Amanda’s situation, she has a few options for finding an egg donor.

Shared Cycle Donation – A New Area for IPs to Consider

Egg, sperm, and embryo donation are all legal third-party reproduction options in Canada, but because “purchasing” eggs, sperm, and embryos is illegal, all donations must be altruistic. Known, or designated, donors are those women among the intended parents’ (IPs) circle of family, friends, and acquaintances who elect to donate eggs to the couple. Anonymous donors are not known to the IPs, but instead come through an agency or advertising avenue. Whereas some countries, like the U.S., allow IPs to compensate their egg donors, this practice is prohibited in Canada under the AHRA. (In fact, so is compensating sperm donors and surrogate mothers. Some experts argue that this restriction has

Shared cycle donation is an emerging topic that IPs can consider. With this type of donation, eggs from a single donor will be shared between two or three IPs. Because multiple recipients share the cost of the donor’s treatment – as well as the eggs retrieved – IPs are finding shared cycle donation to be a more cost-effective and appealing option. Typically, one recipient will be designated as the “primary” recipient through a shared cycle. If one IP found the donor, or has been on the waiting list the longest, she may be labeled as the primary recipient. The other IPs sharing the cycle will be designated as “secondary” recipients. If the donor produces an odd number of eggs, the primary recipient will receive the extra egg. Although clinics may promote shared cycle donation as a more cost-effective option, it does not come without its own risks. As one example, because the donor eggs will be divided among more than one set of IPs, there will be fewer embryos that result from the donation cycle. The IPs may not have excess embryos to preserve for future children, or the success rate may be diminished. Another risk involves the donation itself; if the egg donor does not produce enough eggs to be divided among more than one set of IPs, the primary recipient may receive all of the eggs – as well as bear the entire cost of the program. Although this is not a common occurrence, it can happen, and legal agreements always specify how the eggs will be distributed.

WINTER/HIVER 2013-14 • Creating Families

Shared cycle donation is an emerging topic that intended parents can consider. With this type of donation, eggs from a single donor will be shared between two or three sets of intended parents. Let us return to our intended mother, Amanda. She was concerned about her chances of finding an anonymous egg donor, and desired a child who was genetically

related to herself, her husband, and her son. Amanda confided in her sister, Mary Ann, who offered to donate her eggs to help complete Amanda’s family. At that point, both women had many more questions about egg donation.

too, had questions: Because she was not resorting to an anonymous egg donation agency, Amanda needed help to understand the legal and financial arrangements involved in the use of donor eggs.

Mary Ann’s Financial and Legal Position as Egg Donor

Mary Ann’s Situation – The Egg Donor Becoming an egg donor was not a decision that Mary Ann took lightly. Emotional and psychological factors aside, however, Mary Ann needed to understand how to donate her eggs to her sister, what the legal landscape looked like, and what the risks were to her and her own future fertility.

Amanda’s Situation – The Intended Parent Recipient Accepting her sister’s donor eggs meant that Amanda was facing another IVF cycle. She,

Because the two issues are intertwined, let’s examine how the decision to donate her eggs affects Mary Ann both financially and legally. In terms of Mary Ann’s financial position, she should not lose financially as a result of the donation. All of the costs associated with the preparation and the egg retrieval procedure will be covered directly by Amanda and her husband. The AHRA makes it illegal for Amanda and her husband to compensate Mary Ann for her donation. However, Mary Ann will likely incur some out-of-pocket expenses, such as gas, parking and perhaps

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Créons des familles • WINTER/HIVER 2013-14

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child care, in the course of her donation. Under the AHRA, Mary-Ann’s out-of-pocket expenses related to the donation may be reimbursed to her. The problem lies in the fact that the AHRA does not have any accompanying regulations that define what may or may not be an acceptable reimbursable expense. Given the lack of certainty in this regard, Mary Ann may want to maintain good financial records to reflect that she was not compensated for her eggs, but that she was only reimbursed for expenditures incurred in the course of donating her eggs. In terms of Mary Ann’s legal position, she should consider consulting with a lawyer who practices in the area of fertility law in order to arrive at a clear understanding of her rights and responsibilities throughout this journey. Even though Mary Ann is donating eggs to her sister, she should nevertheless retain her own lawyer to provide her with independent legal advice and to ensure that the right protections are contained in an ova donation agreement. For example, Mary Ann will want to ensure that she has no legal obligations to the child as a result of this assisted reproduction process. (The AHRA does not deal with the issue of parental rights of donors and family law legislation across Canada is inconsistent in this regard. Whereas the legislation in some jurisdictions, including Ontario, does not address the parental rights of donors, other jurisdictions have legislated that donors do not have parental rights.) Although the fertility clinic that Amanda and Mary Ann are working with will present them with forms and consents to sign, the lawyer will explore whether Mary Ann is under any duress to donate eggs, will ensure that she understands her rights and obligations, and will ensure that her rights and obligations are clearly spelled out in an ova donation agreement.

Every year, approximately 500 egg donations take place in Canada, according to the Canadian Fertility and Andrology Society, and experts say the process is safe.

Mary Ann’s Medical Scenario as Egg Donor Every year, approximately 500 egg donations take place in Canada, according to the Canadian Fertility and Andrology Society, and experts say the process is safe. Preparation prior to retrieval does require Mary Ann to take several prescribed medications, which have their own side effects that she will need to consider and be aware of. Egg donors should ensure that the hormone treatment being prescribed is reasonable to avoid causing ensuing health risks. The retrieval procedure itself usually lasts about 30 minutes and Mary Ann should anticipate some cramping and discomfort. She can expect her cycles to return to normal after her eggs have been retrieved, although a small number of women may develop ovarian hyperstimulation syndrome. In these cases – less than 10% of egg donation cycles – women will develop short-term weight gain, fluid buildup, and abdominal pain as a result of the fertility medications.

Barring a minimal risk of infection, Mary Ann should expect no future risk to her own fertility; that is, she should expect

WINTER/HIVER 2013-14 • Creating Families

The decision to donate your eggs or to use donor eggs to complete your family is a weighty one, with emotional, psychological, legal, medical and social factors implicated in the decision-making process. As with many other important decisions in life, knowledge is power. The more information you obtain, the more your questions and concerns will become elucidated and the right answer will become clear to you. her fertility prospects to return to pre-egg donation levels. However, all donors should receive follow-up care with a fertility specialist.

Amandaâ&#x20AC;&#x2122;s Legal Position as Intended Parent Recipient As the recipient of the egg donation, Amanda could benefit from retaining a fertility lawyer who will draft a comprehensive ova donation agreement dealing with many important

issues and tailored to the specific circumstances of Amanda and her husband. The contract will contain provisions dealing with the representations and warranties made by the parties, the medical procedures that the donor agrees to undergo, the parental rights of all parties, the reimbursable expenses that may be claimed by the donor and reimbursed by the recipient, and the confidentiality and control of information by the parties. The ova donation agreement with Mary Ann

will also establish what to do with any embryos that result from fertilization but are not transferred to Amanda. She may wish to preserve them for her own future reproductive purposes, dispose of them, or donate them to research or to a third-party couple for their reproductive purposes. In any of those cases, a written agreement will ensure that the decision is left to Amanda and her spouse, rather than to Mary Ann, unless, of course, Amanda chooses to have Mary Ann

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CrĂŠons des familles â&#x20AC;˘ WINTER/HIVER 2013-14

participate in that decision. Although this issue is covered in the consent forms provided by the clinic, it is always an important provision in any ova donation agreement. Typically, donors wish to have some input, and at the very least some knowledge, as to how any excess embryos may be dealt with. If the IVF procedure using Mary Ann’s donated eggs and Amanda’s husband’s sperm is successful, and Amanda conceives and delivers a child, she and her husband will be registered as the child’s legal parents without any necessity for resort to the courts. There is a presumption in Canadian law that a woman who gives birth to a child is the child’s legal parent. Amanda is entitled to the benefit of that presumption, despite the lack of genetic connection between herself and her child.

Amanda’s Financial Position as Intended Parent Recipient The cost of IVF will vary and may exceed $10,000 (except in Quebec), which would include the semen analysis, medications, and IVF. Depending on the clinic that Amanda selects, there may be a nonrefundable deposit. Some expenses may be claimed on Amanda’s income tax return, but the tax relief will depend on her income level, residency, and other deciding factors. Amanda and her spouse do assume a certain

amount of economic risk through the egg donation cycle. Despite Mary Ann’s signatures on medical consent forms, waivers, and contracts, she has the right to withdraw her consent to donating eggs at any time before the egg retrieval. At that point, Amanda and her spouse may have already paid for medical care, prescriptions and legal fees – costs that Mary Ann would not assume, even if she withdraws her consent.

Success Rates Similar to Standard IVF After careful consideration of her options, Amanda chose to complete her egg donation using IVF. She can anticipate a chance of success with her IVF cycle that outpaces that of standard IVF (i.e. using one’s own eggs) because donor eggs are typically from young,

healthy and well-screened women. The decision to donate your eggs or to use donor eggs to complete your family is a weighty one, with emotional, psychological, legal, medical and social factors implicated in the decision-making process. As with many other important decisions in life, knowledge is power. The more information you obtain, the more your questions and concerns will become elucidated and the right answer will become clear to you. About the Author

Michelle Flowerday was called to the Bar of Ontario in 2002 and is the owner of Flowerday Law – a full-service Canadian fertility law firm devoted to guiding intended parents, surrogates, and gamete and embryo donors through the complex legal process of growing, or helping others to grow, a family using third party reproductive technology. From pre-conception to post-birth, from traditional to non-traditional families, from within Canada and abroad, Michelle is a passionate champion for her clients and has the legal expertise and experience to meet her clients’ needs in a clear, compassionate and confidential way. Michelle is a member of the Infertility Awareness Association of Canada and the Canadian Fertility and Andrology Society.

WINTER/HIVER 2013-14 • Creating Families

Why Yoga for Fertility? by Sue Dumais

Créons des familles • WINTER/HIVER 2013-14

Dealing with fertility challenges is something a person can never truly understand unless they have a personal experience of it. At the same time, for those having fertility issues, it can be a very stressful and confusing emotional roller coaster. In the beginning of my own fertility journey I had trouble making sense of everything that was bubbling up inside of me. As each month passed I became more and more confused. The pain, grief, confusion and loss go incredibly deep and many women feel alone, defeated and misunderstood. After a year I thought there had to be another way. That is when the idea of yoga for fertility came into my heart. What if there was a tool that could help transform the experience of fertility? What if there was something you could do that would help you manage all the emotions, thoughts and triggers you experience around your challenge conceiving a child? What if there was another way to deal with the ups and downs of your monthly roller coaster ride? When I first began teaching Yoga for Fertility it was because I needed it. I was desperately searching for answers to why I couldn’t conceive. I was willing to try anything and everything to get pregnant. At the time, I had been teaching yoga for years and as my own fertility journey grew in effort I turned to changing my own yoga practice. An internet search confirmed there were no yoga classes specific to helping women conceive anywhere in Canada which inspired me to start teaching classes on yoga for fertility. The first four yoga for fertility classes were completely different than any other yoga class I had taught. It felt very therapeutic. I would see women come into the class with stress and worry on their face and leave looking calm and relaxed. There were lots of tears and sharing of emotions. We felt a sense of comfort as we listened deeply to each other’s struggles. Women would tell me how different they felt about their

fertility journey after only six classes. Other women reported that they felt comforted knowing they were not alone. Everyone experienced a sense of community by joining with other women going through similar circumstances and challenges. Not only did the yoga for fertility classes provide a sense of belonging, but the postures and meditation also helped reduce stress and anxiety. According to studies done by Alice Domar, author of Conquering Infertility and psychologist and director for the Mind-Body Center for Women at Boston IVF, the higher a woman’s stress level, the less likely she is to get pregnant. Psychological or physiological stresses such as life changes, loss of a loved one, college stresses, dieting and excess training, have all been associated with menstrual cycle disturbances, increased cortisol levels, and a decrease in reproductive functioning. Domar’s research

What if there was a tool that could help transform the experience of fertility? What if there was something you could do that would help you manage all the emotions, thoughts and triggers you experience around your challenge conceiving a child?

I would see women come into the class with stress and worry on their face and leave looking calm and relaxed. also suggests that mind-body techniques that elicit a relaxation response, such as meditation and yoga, can reduce stress and increase a couple’s chance of conceiving. Yoga is so much more than physical exercise; it is a daily practice that can nurture your mind, body and soul by providing: - Specific yoga poses that help release tension and soften the muscles of the pelvis, abdomen and lower back, thereby increasing blood and energy to your reproductive organs. - Supportive dialogue to help you explore the emotional challenges specific to your fertility journey. - Yoga, meditation and mind-body tools to help reduce stress and anxiety related to your fertility as well as other areas of your life. By focusing on deep breathing exercises you are able to turn off your body’s parasympathetic nervous system (flight or fight stress response) and turn on your sympathetic nervous system (rest and restore response). - Help you find ways to cope with challenging life situations like birth announcements and baby showers. - A sense of community and belonging in a very isolating emotional experience.

- A safe place where you can feel like everyone around you understands what you are going through. A place where everyone “gets it” on a deep level and you can let go of the fear or worry that someone will say something hurtful or insensitive. - An opportunity to nurture yourself by practicing vibrant self care. You are able to make healthier choices because you feel better about yourself and circumstances. -Tools to help you to re-connect with and trust your intuition so that you can make informed choices based on knowing what is best for you, rather than making choices out of desperation or defeatism. -A teacher who believes in you and will hold faith that YOU can be a Mother. Practicing yoga for fertility will transform your experience of fertility, and it will change how you deal with all challenges in your life. It provides an opportunity to tap into a deep level of trust when you realize that whatever you are going through, you are growing through. Life is not out to get us. It is designed to awaken us and heal anything that is no longer serving us. For example, it could be that your fertility journey is meant to help you heal so you can be a better parent. When we find meaning through life’s challenges we can make peace with what is on our path. My fertility journey taught me to Mother myself and it strengthened me in a way that makes me a better Mother today. I continue to practice yoga every day and I have learned to fill my heart first so I can give from the overflow. I don’t feel depleted and I can nurture my children without losing my sense of self. Yoga provides space for deep connection to your sense of self and I have even witnessed how a regular practice can nurture relationships and intimacy. I remember one phone call from a woman’s husband who said, “Whatever you are doing, keep doing

it. I finally feel like I have my wife back.”

Here are a few ways you can get started: To find a yoga for fertility class in your area visit www.yogaforfertilityresources.com. If you can’t find a class in your area you can attend a restorative yoga class. Be sure to tell the instructor you want to conceive a child. I recommend you avoid any postures with deep abdominal twisting as that may interfere with the blood flow to your reproductive organs (especially after ovulation). You will also want to avoid any inversion postures during your menstrual cycle to prevent the back flow of blood. To create a regular yoga practice in the comfort of your own home, visit www.familypassages.ca to learn more about the Fertility Yoga & Meditation Kit. Here are some fertility yoga poses you can do right away at home:

WINTER/HIVER 2013-14 • Creating Families

Research also suggests that mind-body techniques that elicit a relaxation response, such as meditation and yoga, can reduce stress and increase a couple’s chance of conceiving. inches depending on your level of comfort. *DO NOT use a bolster with this pose during menstruation. Photo credit: Adrienne Thiessen of Gemini Visuals. Fertility Yoga pose source: Yoga for Fertility Handbook by Sue Dumais.

Legs up the Wall pose This pose will increase the blood supply to your pelvic area, calm the mind and relieve tired legs and feet. If you focus on expanding your belly with each inhale, it will help you soften the muscles of your vaginal wall and pelvic area. Imagine softness in your uterus and ovaries allowing the flow of blood and energy without restriction or tension. Preparation: Lie on your side with your buttocks close to or against the wall (or

tree). As you slowly roll over onto your back gently lift one leg at a time and place it against the wall. Once you are on your back, rest the legs against the wall. Stay in this pose for 5-15 minutes as you concentrate on your breathing. To come out of the pose gently bend your knees and roll over on to your side remaining on your side for 10 to 15 breaths. Modifications: This pose can be performed using a bolster, block or blanket under the pelvis. The blanket or bolster should lift the pelvis approximately 2-3

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Créons des familles • WINTER/HIVER 2013-14

Option: Move your legs away from each other creating a mild stretch for your inner thigh. This pose will increase the blood supply to the pelvic area, calm the mind, and relieve tired legs and feet. If you concentrate on breathing, using your diaphragm, it will help you soften the muscles of the vaginal wall and pelvic area. Imagine a softness in the uterus and ovaries allowing the flow of blood and energy without restriction or tension. Inner Reflection: Focus on your desire to have a baby. Begin to invite your baby to come into your life. Change your perspective: you are no longer “waiting” or “trying”, from now on you are “open to conceive” or “inviting your baby.”

Yoga is so much more than physical exercise; it is a daily practice that can nurture your mind, body and soul.

Life is filled with challenges but it is our ability to cope with what life brings that will determine our experience of it. Yoga and meditation are powerful tools that help you learn how to navigate life and all its stressors and upsets. I have witnessed it transform the experience of hundreds of women and it can do the same for you. It all begins with opening up to the idea that that there can be another way. Yoga for fertility can help you conceive your dream of having a child and it can also nurture you as you learn how to be fertile in every area of life.

Practicing yoga for fertility will transform Photo credit: Adrienne Thiessen of Gemini Visuals. Fertility Yoga pose source: Yoga for Fertility Handbook by Sue Dumais.

Child’s Pose This pose calms your nervous system, helps reduce blood pressure and balances the endocrine system. It is a resting pose that relaxes and calms your mind and body while lengthening your spine and reducing tension in your back and neck. In relation to fertility, I recommend performing child’s pose with your knees apart; this allows space for your belly to drop toward the floor with each inhale. Imagine softness in your uterus and ovaries allowing the flow of blood and energy without restriction or tension. Preparation: Kneel on the floor with your knees slightly wider than your hip joints. Keep your feet together. Sit back with your hips and bring your chest toward the floor. Reach your arms forward and place your hands and forehead on the floor. Modifications: If there is a space between your heels and pelvis place a block to provide support. You can use a bolster or

your experience of

pillow under your head and arms or bend your elbows and place your hands under your forehead.

fertility, and it will

Option: Turtle Pose - Place your hands beside your feet or ankles creating more security and safety as you settle into your “shell” for protection.

with all challenges in

Inner Reflection: Bring your awareness to your thoughts about yourself and your body. Notice whether your thoughts are positive or negative. Accept the thoughts and imagine them floating away with feeling attached to them. Begin to invite more positive thoughts and perhaps repeat one the following affirmations: “I love my body and trust it’s wisdom” “I am whole and complete” “I accept my body” “I forgive myself” “I am fertile”

change how you deal

your life. About the Author Sue is the author of the Yoga for Fertility Handbook and A Strong Core for Life. Recognizing the need for more fertility support worldwide, she developed the first and only international Fitness Fertility Specialist Certification course as well as a Fertility Yoga Teacher Training Program. Sue also developed a Fertility Yoga & Meditation Kit that has been sold all around the world. Sue is passionate about her work and her life. She has proven that living with fertility challenges can be a rich and rewarding life experience. Sue has a gentle yet powerful way of helping others unleash their full fertile potential and conceive their dreams.

WINTER/HIVER 2013-14 • Creating Families

L’infertilité par les circonstances de la vie

par CatherineEmmanuelle Delisle Ma vie débute en Montérégie, dans le village de Saint-Denis-sur-Richelieu. J’y passe une petite enfance que je qualifie souvent d’idyllique. Je profite du grand air, j’ai des amis, la vie est simple et sans encombres. Vers le début de mon cours primaire, notre famille quittera la campagne

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pour s’établir définitivement à St-Bruno-de-Montarville, en banlieue de Montréal.

Trajectoire sur un sentier parallèle à celui des autres femmes.

Puis ce fut l’adolescence, que j’ai entamée en ayant la nette impression d’être différente des autres filles de mon âge, ce qui est, je le réalise maintenant avec le recul, le propre de l’adolescence. Timide et intellectuelle, je n’éprouve pas ce besoin qu’ont beaucoup de jeunes d’affirmer leur personnalité haut et fort.

rends compte que l’écart entre moi et les filles de mon âge s’accentue : je n’ai pas connu encore les transformations physiques sensées faire de moi « une femme ». Je n’ai pas de menstruations et mon corps ressemble encore à celui d’une enfant de 12 ans. Une consultation déterminante à l’Hôpital Sainte-Justine m’apprendra, à l’âge de 14 ans, que je souffre d’aménorrhée inexpliquée. En fait, je suis en ménopause précoce avant même d’avoir connu la puberté !

Cependant, vers l’âge de 14 ans, je me

Dans l’espoir que ma puberté se

Une consultation déterminante à l’Hôpital Sainte-Justine m’apprendra, à l’âge de 14 ans, que je souffre d’aménorrhée inexpliquée. En fait, je suis en ménopause précoce avant même d’avoir connu la

d’ovules, la fécondation in vitro ou l’insémination. Jusqu’à l’âge de 30 ans, j’ai donc évité à toutes fins pratiques de parler de ma situation, sauf avec quelques amies proches. N’ayant pas encore trouvé l’homme avec qui je me verrais avoir des enfants, la question de concevoir n’était pas envisageable. J’ai soigneusement enfoui mes émotions et mon deuil de la procréation pour éviter d’y penser et de souffrir. Personne n’était comme moi et ne pouvait comprendre ma situation : inutile d’en parler.

puberté ! La mi-trentaine déclenchera naturellement, les médecins attendront jusqu’à ce que je sois âgée de 16 ans avant de me prescrire des anovulants. Ceux-ci déclencheront enfin ma puberté et mes menstruations qui ne seront en réalité, comme le disent les spécialistes, que des saignements de retrait. Quelques mois plus tard, j’aurai finalement un corps de jeune femme vers l’âge de 16 ans.

Les suites du diagnostic Lors de l’annonce du diagnostic d’infertilité, j’étais heureusement accompagnée de ma mère. Je me souviens que sur le chemin du retour de l’hôpital, ma mère et moi avons pleuré en silence ma perte : je ne pourrais jamais avoir un enfant ayant les gènes de mes ancêtres, un enfant qui me ressemble. S’en est suivie une période de mise en veilleuse de ce douloureux constat. Je me disais trop jeune pour me tracasser avec cette nouvelle. Au moment opportun, quand j’aurais un amoureux et me sentirais prête à avoir des enfants, j’ouvrirais cette plaie à nouveau et je ferais face aux émotions qui y sont rattachées. Je pourrais peut-être opter pour l’adoption ou le don

Vers la mi-trentaine, confrontée aux multiples naissances des enfants de mes amies et collègues, je me suis sentie de plus en plus envahie par des sentiments de tristesse, d’impuissance et d’isolement. Je n’arrivais pas à m’identifier aux femmes de mon entourage. J’ai donc décidé d’amorcer plus concrètement une démarche de deuil dans le but de faire face, d’accepter et de faire la paix avec tout cela. Je devais aussi arriver à briser mon isolement. J’ai tout d’abord consulté en psychologie, histoire de briser la glace. Après avoir abordé le sujet au cours de multiples rencontres, j’ai réalisé que l’adoption ne me convenait pas. J’avais tout simplement du mal à envisager avoir un enfant qui ne me ressemblerait pas. Je ne me voyais pas davantage recourir au don d’ovules ni à l’insémination. Je me disais que si la vie avait décidé pour moi que je ne devais pas avoir d’enfant, d’autres défis à relever m’attendaient.

de Montréal. À ma grande surprise, j’ai constaté qu’il n’existe pratiquement aucune ressource disponible. Enfin, en mai 2012, je fais la découverte du blogue en anglais « Life Without Baby » créé par Lisa Manterfield. Cette Anglaise d’origine, qui réside aujourd’hui en Californie, y parle de sa vie sans enfant et offre la possibilité de suivre un programme d’accompagnement (Mentorship Program) pour réussir à vivre le deuil de la maternité. Quatorze autres femmes sans enfant s’inscriront à ce programme. Ce sera la première fois que j’échangerai sur le sujet de l’infertilité avec d’autres femmes susceptibles d’avoir connu les mêmes défis que moi.

Le rituel de passage Une des étapes du programme mis sur pied par Lisa Manterfield consiste à laisser aller le rêve d’enfanter et tout ce qui y est associé en posant un geste concret. Ce geste peut prendre toutes sortes de formes : cérémonie, moment de recueillement, écriture de textes, etc. Pour ma part, j’ai décidé de poser un geste symbolique dans le but de marquer ce passage. En compagnie de mes parents et

Je me suis mise par la suite à la recherche de documentation et de livres en français sur le sujet de l’infertilité pour réaliser qu’il en existait très peu. Mes recherches se sont étendues vers la toile dans l’espoir de trouver des groupes de soutien sur la Rive-Sud

WINTER/HIVER 2013-14 • Creating Families

de ma sœur, j’ai choisi de planter un arbre dans un parc de ma ville. Avant de le mettre en terre, j’ai pris soin de lire un texte dressant la liste de toutes les raisons pour lesquelles j’aurais voulu avoir des enfants. J’ai ensuite placé cette liste sous les racines de l’arbre et procédé, avec l’aide des mes proches, à la mise en terre. Ce fut un moment fort en émotions pour moi et mes proches, qui a marqué le début véritable de mon deuil.

La création du blogue « Être femme sans enfant » La fin du programme de soutien en compagnie de Lisa et des autres femmes me laissa de nouveau seule avec mes questionnements. C’est à ce moment qu’il m’est apparu évident que je devais me servir de ce défi pour donner un nouveau sens à mon existence en tant que femme sans enfant. J’ai donc décidé de lancer mon blogue en

Créons des familles • WINTER/HIVER 2013-14

J’ai décidé de poser un geste symbolique dans le but de marquer ce passage. En compagnie de mes parents et de ma sœur, j’ai choisi de planter un arbre dans un parc de ma ville. français pour tenter de rallier les femmes sans enfant parfois emmurées dans leur silence, invisibles dans cette société où être maman est « la » chose à faire et à vivre ! C’est donc en novembre 2012 que j’ai créé « Être femme sans enfant », mon blogue qui a été visité plus de 21 000 fois depuis sa création. En plus de publier quotidiennement sur mon blogue, je diffuse des

informations et articles en français et en anglais par l’entremise des médias sociaux comme Facebook, Twitter, Google + et Pinterest. J’y parle de la situation des femmes sans enfant par choix ou par les circonstances de la vie. Je réalise également des entrevues avec des femmes sans enfant pour faire connaître et comprendre leurs existences, les préjugés auxquels elles font face et les défis quotidiens qu’elles doivent relever. J’ai eu la chance de recueillir notamment les confidences de l’animatrice Pénélope McQuade, de la comédienne Geneviève Brouillette et de la directrice de la section française de l’École Nationale de Théâtre du Canada, Madame Denise Guilbault. Je me suis entretenue également avec des hommes et des femmes inconnus du grand public sur les questions de l’infertilité par choix ou par les circonstances de la vie. Enfin, en plus d’avoir une section « Être femme sans enfant » sur Pinterest, j’y ai créé un babillard intitulé « Femme francophones inspirantes et sans enfant ». Mon objectif est de mettre de l’avant des modèles de femmes épanouies et heureuses sans

Je souhaite de tout cœur que l’on parle davantage des femmes et des hommes sans enfant dans les médias, de leurs rêves et de leurs vies remplies, réussies, accomplies. Je crois maintenant qu’il est possible de survivre à l’infertilité en investissant temps, énergie et amour à l’actualisation de soi-même. enfant. Il est temps, selon moi, qu’on offre des modèles d’accomplissement différents aux femmes en général. Je souhaite de tout cœur que l’on parle davantage des femmes et des hommes sans

enfant dans les médias, de leurs rêves et de leurs vies remplies, réussies, accomplies. Je caresse le souhait que l’on ne dépeigne plus ces femmes et ces hommes comme des gens forcément amers, ayant choisi la carrière par dépit, faute d’avoir des enfants. Je crois maintenant qu’il est possible de survivre à l’infertilité en investissant temps, énergie et amour à l’actualisation de soi-même. En redéfinissant de nouveaux buts pour notre existence, en établissant des objectifs de vie qui ne seront pas nécessairement tournés vers la fondation d’une famille, je crois qu’il est possible de se créer une vie réussie, différente et tout aussi valable que celle des gens ayant des enfants. Un chemin parallèle, hors normes, parsemé d’embûches mais tellement palpitant ! À propos de l’auteure

Âgée de 37 ans, Catherine-Emmanuelle Delisle, est enseignante au primaire en art dramatique et en francisation. En novembre 2012, elle a créé le blogue « Être femme sans enfant. » Références : http://etrefemmesansenfant.blogspot.ca https://www.facebook.com/etrefemmesansenfant

WINTER/HIVER 2013-14 • Creating Families

Tick Tock

Goes My Biological Clock CoQ10 and its Role in Aging Eggs

by Tracy Malone, ND

Créons des familles • WINTER/HIVER 2013-14

Being a Generation X girl, I spent most of my 20’s in post-secondary education programs, as I take my work and my career seriously. Although I have always assumed I would have a family, I spent the majority of my fertile years on the pill – the time never seemed to be right. Then reality hits. I am 36 years old. By age 37, my egg supply had dropped from 400,000 to about 25,000.

Low egg reserves result in a decline of hormone expression causing a deterioration in our ovarian function; the dwindling supply decreases the chances of conception as we age. Reproductive aging is equated with ovarian aging, which means a decrease in quantity and quality of the pool of eggs (referred to as follicles when they are immature) remaining in the ovary. It is normal to see this decline between the ages of 35-38, then a sharper decline in women over the age of 40.

Biological age vs. Chronological age The story of aging, however, isn’t always directly related to age in years. “Biological age” - how old your cells behave on a physiological level – is often different from “chronological age” – how old you are in years. In other words a woman could be 30 years old and have the body, or in this case the ovaries, of a 40-year old.

Quality, Quantity, and Mitochondria

Antral follicles. They are also referred to as resting follicles. Visualized by ultra sound on Day 3, they are a good predictor of “ovarian reserve.”

“Ovarian Reserve” refers to the remaining egg supply available to make babies. No one test is perfect, and fertility doctors typically use several tests to estimate ovarian aging. These tests are typically predictive of the QUANTITY of these follicles, however they are not indicative of their QUALITY. One can usually assume that if the ovarian reserve is low, then the quality of the follicles is also on the decline.

We are witnessing an increased incidence of premature ovarian insufficiency in young women. Whether there is an actual increase in the number of cases or whether it is identified earlier with more frequency, no one knows yet. Oocytes (mature eggs) of women with ovarian insufficiency have been reported to contain lower numbers of mitochondria than those of women with a normal ovarian profile. Think of the mitochondria as the “engine” of the cell; it produces energy to support the metabolic needs of the cell. The ability of the oocyte to produce adequate quantity of mitochondria and cellular energy has been shown to be affected by the mother’s nutritional and caloric status, obesity, insulin resistance and diabetes.

The quality of eggs diminishes with age, as ever-present exposure to pollution, poor diet, and stress cumulate in the woman’s body. Free radicals and oxidative stress begin to accumulate in our cells, “aging” or slowing down the metabolic energy production centers in the cell – the mitochondria. When the mitochondria cannot generate a certain amount of energy to support its biological demands, it slows growth and proper development of the follicle. Chronic energy depletion makes the follicle more prone to DNA damage, including chromosomal abnormalities. Mother Nature watches closely, and if the DNA pattern doesn’t look quite right it will often result in poor fertilization patterns, and early miscarriage.

Markers of ovarian aging are:

Some types of free radical damage can be repaired, but once cellular DNA or mitochondria are damaged, there is no possibility for repair; they simply will have a reduced capacity to produce cellular energy. Because of the DNA damage, we have permanently “aged” our cells, making them less efficient. Therefore, it is very important to prevent oxidative damage from occurring in the first place, especially if you are choosing to have children after the age of 35.

Day 3-FSH (follicle stimulating hormone). If it is greater than 10, it may indicate poor ovarian response from the body’s hormonal signals. Anti Mullerian Hormone. Low AMH blood levels (less than 1) are thought to reflect the size of the remaining egg supply - or "ovarian reserve.”

By age 37, my egg supply had dropped from 400,000 to about 25,000.

WINTER/HIVER 2013-14 • Creating Families

amount of mitochondria compared to all other cells, because it requires so much energy to divide its chromosomes properly and eventually grow into an embryo.

The process of the follicle maturing into a mature oocyte requires a significant amount of cellular energy. The production of enerThe aging process is complex and is affectgy for the metabolic requirements of the ed by genetic predisposition, impaired oocyte is provided by the mitochondria. mitochondrial function, genetic instability, Certain tissues have higher energy requireoxidative stress, caloric intake and metaboments: the heart, muscles, and neurons all lic activity. Mitochondria abnormalities or require high amounts of energy in order to ,9)BDQQ&) /D\RXW $0 3DJH mutations are believed to be influenced by function. The oocyte contains double the

maternal obesity, insulin resistance, type II diabetes, high cholesterol, and high blood pressure. Mitochondria in the offspring is exclusively inherited from the mother. In addition, inheritance of dysfunctional maternal mitochondria by the next generation could increase the risk of developing adult diseases later in life.1

The best antidote to energy loss in the mitochondria is to ensure that we have plenty of antioxidants standing by to shield our DNA from free radicals, nutrient stress, and pollution. Most antioxidants are not capable of working within the mitochondria because they cannot get inside. The antioxidants that can find their way inside the mitochondria are referred to as mitochondrial antioxidants. In recent years clinical research has displayed one mitochondrial antioxidant in particular, Coenzyme Q10.

IVF Canada/Life has been of providing infertility treatments 2008 marks the Program 25th anniversary IVF Canada/LIFE Program providing to patientstreatments across Canada and around theCanada world for years!the world. infertility to patients across and30around A leader in the field of Assisted Reproductive Technologies (ARTs), IVF Canada/LIFE Program is a free-standing surgical facility offering the most advanced technologies available for the treatment of male and female infertility. Our personalized patient care, consideration of couples with unique circumstances and timely access to treatment has made us the most patient-focused and accessible private IVF clinic in Canada.

IVF Canada/LIFE Program provides a comprehensive list of fertility services: U IVF (In Vitro Fertilization) U ICSI (Intracytoplasmic Sperm Injection) U IVM (In Vitro Maturation) U Blastocyst Culturing U PGD (Preimplantation Genetic Diagnosis) U Egg Freezing U Egg Gestational DonationSurrogacy U Gestational Many, manySurrogacy more Many, many more

What makes us different? U 25 30 years proven experience providing IVF and other ART treatments U Anaesthetist-administered anaesthesia for ovum retrievals U Laparoscopic ovum retrievals with general anaesthesia for those patients with inaccessible ovaries U Treatment for the older female (where appropriate) IVM – treatment with polycystic ovaries U Special facilities for forpatients hepatitis-positive patients U No Waiting Lists ! - Quick access to treatment U Less work absenteeism because our unique monitoring schedule requires only once-per-day visits IVF Canada & The LIFE Program (and sometimes less) 2347 Kennedy Road (Suite 304), Scarborough, Ontario, M1T 3T8 U Success rates comparable to the top units in the world ! Telephone: (416) 754-1010 754-8742 Fax: (416) 321-1239 U Compassionate IVF Treatment Program Email: info@ivfcanada.com Website: www.ivfcanada.com

Créons des familles • WINTER/HIVER 2013-14

CoQ10 CoQ10 functions as an antioxidant because of its ability to loosely hold electrons and give them up as needed to quench free radicals. In other words it acts as an “antioxidant shield,” protecting our DNA from damage. It is also an essential co-factor in the cellular energy production process – “high grade fuel to run your cellular engine.” Coenzyme Q10 is a lipid-soluble component of virtually all cell membranes. It is a major cellular antioxidant – levels of CoQ10 are five to 10 times higher than the other main lipid soluble antioxidant, vitamin E.2 Typically CoQ10 is administered to patients experiencing infertility, who are over the age of 35 or are experiencing symptoms of low ovarian reserve. Usual dosages of 100-3000mg/day3 result in a significant increase of CoQ10 concentrations in the plasma, muscle, and sperm.4,5,6 Interestingly, by comparison, dietary CoQ10 in various tissues shows a remarkable uptake by the adrenal gland and the ovary, which more than double their concentrations.7 A recent study published in 2012 in a peer-reviewed publication, The Journal of Urology, investigated the effects of ubiquinol (the reduced form of CoQ10) in subjects with male infertility.8 The study demonstrated that supplementation with 200 mg of ubiquinol per day significantly improved sperm density, sperm motility, and sperm strict morphology. The researchers pointed out that oxidative stress (OS) is one of the main factors that influence male infertility.

CoQ10 functions as an antioxidant because of its ability to loosely hold electrons and give them up as needed to quench free radicals. In other words it acts as an “antioxidant shield,” protecting our DNA from damage.

What can I do to improve the quality of my eggs? Considerations surrounding physical, environmental, and behavioral factors have a major impact on the preconception and early pregnancy stages, as well as future fertility. The production and development of mature eggs (oocytes) depend on the follicular environment (i.e. mother’s health). This environment may be altered by the mother’s nutrient status and lifestyle. When a woman is diseased, under- or over-nourished, or when she exposes herself to environmental toxicants, such as drugs, alcohol and other environmental chemicals, she essentially “oxidizes” or “ages” her

WINTER/HIVER 2013-14 • Creating Families

A study demonstrated that supplementation with 200 mg of ubiquinol per day significantly improved sperm density, sperm motility, and sperm strict morphology. It suggests that CoQ10 is a very safe and effective way to improve the quantity and quality of eggs, in age-related infertility. cells. If this condition becomes chronic, it can affect the ovaries, the ever-present maturing follicles, and the health of the baby-to-be. When you are trying to augment mitochondrial function, higher, therapeutic levels are needed. In order to directly increase Coenzyme Q10 levels in the body, supplementation is required. Ubiquinol, the active form of Coenzyme Q10, has demonstrated the ability to improve mitochondrial energy production, even in “aged” eggs. Preliminary data collected by Toronto’s own Dr. Robert F. Casper, and by Dr.

Créons des familles • WINTER/HIVER 2012-13

Yaakov Bentov, have shown that CoQ10 could be a useful treatment for age-related subfertility. The subjects were given 600mg/day of ubiquinol, prior to ovarian stimulation. The CoQ10 group was found to have increased oocyte numbers and oocyte mitochondrial activity, similar to oocytes from young subjects. Simply put, it suggests that CoQ10 is a very safe and effective way to improve the quantity and quality of eggs, in age-related infertility.

Stress Less – Your Egg PEP Prep Stress, all forms of it, causes increased free radical production in the mitochondria.

High levels of free radicals damage DNA and age your cells. Psychological stress is but ONE form of stress. Environmental stress comes from pollution, pesticides, and plastics. Be aware of your day-to-day environment, the food you eat, the water you drink, the products you use. Think “chemical minimalism”. Physiological and metabolic stress can occur due to poor nutritional habits, skipping meals, sleep deprivation, and social drugs such as caffeine, nicotine, alcohol, etc., poor immune health,

4 Balercia G, Mosca F, Mantero F, Boscaro M, Mancini A, Ricciardo-Lamonica G, et al. Coenzyme Q(10) supplementation in infertile men with idiopathic asthenzoospermia: an open, uncontrolled pilot study. Fertil Steril 2004:81:93-8. 5 Cooke M, Iosia M, Buford T, Shelmadine B, Hudson G, Kersick C, et al. Effects of acute and 14day coenzyme Q10 supplementation on exercise performance in both trained and untrained individual. J Int Soc Sports Nutr 2008;5:8. 6 Mizuno K, Tanaka M, Nozaki S, Mirzuma H, Ataka S, Tahara T, et al. Antifatigue effects of coenzyme Q10 during physical fatigue. Nutrition 2008;24:293-9. 7 Betinger M, Tekle M, Brismar K, Chonjnacki T, Swiezewska E, Dallner G. Stimuation of coenzyme Q synthesis. Biofactors 2008:32:99-111.

and chronic disease. About the Author By making basic lifestyle changes you can reduce the amount of stress your body encounters on a regular basis, thereby reducing free radical accumulation and cellular aging. Consumption of foods containing certain precursors increase production of Coenzyme Q10. These precursors include: methionine and tyrosine, best obtained from meat, fish, and poultry. Choosing foods that are high in vitamin C, vitamin E, and Vitamin A as well as buying pesticide-free produce can improve the antioxidant status of your diet naturally.

Tracy Malone is a Naturopathic Doctor with a clinical care focus on fertility and endocrinology. Dr. Malone's private practice – Conceive Health – provides an integrative approach to fertility care and IVF acupuncture services at the Toronto Centre of Advanced Reproductive Technology - TCART. Dr. Malone is a clinical faculty member at the Canadian College of Naturopathic Medicine.

8 Safarinejad, Mohammad Reza; Safarinejad, Shiva; Shafiei, Nayyer; Safarinejad, Saba (2012). "Effects of the Reduced Form of Coenzyme Q10 (Ubiquinol) on Semen Parameters in Men with Idiopathic Infertility: A Double-Blind, Placebo Controlled, Randomized Study". The Journal of Urology 188 (2): 526–31.

References:

Healthy diet and lifestyle practices are critical for all fertility patients, however supplementation is often necessary to reach therapeutic levels of certain vitamins, minerals, and antioxidants. There is significant evidence suggesting that CoQ10 should be part of anyone’s prenatal plan, if they are going to have children over the age of 35. Consider a consultation with a fertility specialist, aimed at providing an individually tailored pre-conception plan to optimize your fertility.

1 Mark Bentov Y, Casper RF, Esfandiari N et al. The contribution of mitochondrial function to reproductive aging. J Assist Reprod Genet (2011) 28:773-783. 2 Bentiger M, Brismar K, Dallner G. The antioxidant role of coenzyme Q. Mitochondrion 2007 ;(7 Supple):S41-50. 3 Hidaka T, Fujii K, Funahashi I, Fukutomi N, Hosoe K. Saftey assessment of coenzyme Q10 (CoQ10). Biofactors 2008;32:199-208.

WINTER/HIVER 2012-13 • Creating Families

The LGBTQ Column

LBQ WOMEN and IN/FERTILITY by RACHEL EPSTEIN “We enter the clinic nine times out of ten just imagining that we need some help with insemination – we are immediately treated as though we have fertility issues… For some of us this becomes a reality, but still our needs are different.” - Dahlia Riback, Still Trying facilitator

This month’s column addresses the particular experiences and concerns of lesbian, bisexual and queer (LBQ – or queer for short) cisgender (non-trans) women in the course of their fertility, and infertility, journeys. The column is specifically about those who choose pregnancy as their route to parenthood.

A complex route to parenthood While some LBQ women might get pregnant through heterosexual intercourse, the majority of those planning pregnancies do not choose this route. And while some may have more direct access to sperm, for example those partnered or co-parenting with trans women, most do not have easy access to sperm. The planning of a pregnancy can involve considerable time, energy, thought, and often, expense. As a participant from the Creating Our Families (see box right) study puts it: “When we were looking for options for having a family, there’s a lot of logistics that come into it. We were like,

Créons des familles • WINTER/HIVER 2013-14

Wow! I knew this would be work but I didn’t know it would be this much work. We actually called it Project Pregnancy. It was like a parttime job. We both called in sick one day and spent the day doing research, making phone calls and figuring out our options.” Probably the most complex decision for queer women planning a pregnancy relates to The quotes in this column are all taken from participants in the Creating Our Families (COF) research project. The COF project was a CIHR-funded partnership between researchers at the Centre for Addiction and Mental Health, the Sherbourne Health Centre, St. Michael’s Hospital and York University in Toronto. The pilot study interviewed 66 LGBTQ people across Ontario about their experiences with fertility clinics. For more information and to download the bilingual resources developed from the project, go to: www.lgbtqparentingnetwork.ca/resources .cfm. The project also created an interactive theatre piece (see LGBTQ Column,

Creating Families, Winter 2012/2013) which is now being made into a video for presentations to fertility clinics and other AHR services. For more info, or to support the project, email: parentingnetwork@sherbourne.on.ca.

The LGBTQ Column Before most LBQ women get to the point of actually trying to get pregnant, they have spent a lot of time hunting down information, exploring options and making complicated decisions. choosing a sperm donor. The first order of decision-making involves choosing a donor from a sperm bank or one known to the intended parent(s). If one is going the sperm bank route there are choices to be made about complete anonymity or what is known as I.D. Release –i.e. donor information can be made available to the child when he or she turns 18. The route of the known donor involves another set of choices and negotiations. Each of these options involves a different, and complex, set of issues, the details of which are beyond the scope of this column (but perhaps the subject of a future one!) What is significant for a discussion of “ infertility” is the fact that before most LBQ women get to the point of actually trying to get pregnant, they have spent a lot of time hunting down information, exploring options and making complicated decisions.

A fuzzy line between ‘fertility’ and ‘infertility’ Depending on the decisions we make about sperm donors, we may choose to simply inseminate at home (most likely with a syringe - not the iconic turkey baster), or we may choose referral to a fertility clinic. Many would prefer to stay at home, but find themselves in clinics because of the choices they make regarding the source of sperm or because they want to access some of the services and technologies available in the clinic, such as cycle monitoring or various forms of

tests. For those of us who choose to access fertility clinics as the first stop in our journey to conception there are several implications. Because we are entering a system set up to serve heterosexual, cisgender couples dealing with infertility, there is often a fuzzy line in our own treatment between ‘fertility’ and ‘infertility.’ “Not having access to sperm is a really different thing than trying to get pregnant with sperm and having trouble… I think the idea that ‘queerness,’ like being a lesbian, in and of itself is a fertility problem, is ridiculous. I just think [AHR services] need a whole re-think in order to make sense to everybody who is accessing them.” – Single queer woman in a small city who had a child but avoided AHR.

When we enter clinics we encounter intake and consent forms and language that do not work for us, as well as incorrect assumptions about our sexual/gender identities and family configurations. The result is an experience that is often alienating, and sometimes hurtful and frustrating.1 And because we have often spent months, sometimes years, researching and planning, by the time we arrive at the clinic or begin home insemination we may already feel depleted and impatient with the process. Some people find the clinic environment itself a source of stress:

differ from that of straight women or couples? The first answer is: it doesn’t. Infertility and pregnancy/infant loss are painful, no matter who you are: “In some ways your sexual orientation feels almost irrelevant when you’re struggling with fertility issues … because that becomes the central thing.” On the other hand, our identities, family configurations and routes to parenthood mean there are some particularities to our experience.

Early detection of problems The upside of our early entry into fertility clinics is that sometimes we can detect fertility problems early on. For example, the couple below discovered that each of them had a significant barrier to fertility that needed to be addressed: “She originally thought, ‘we don’t need a fertility specialist, it’s not like we’re infertile, we just need somebody to get us pregnant…’ Then it turned out that my partner had endometriosis… And then [after the first baby

“I’m quite certain it took me so long to get pregnant because my stress level spiked… Having someone you don’t know inseminate you is not exactly the most conducive to relaxing. The metal thing they put in you... the whole procedure isn’t comfortable, right?” While many queer women do get pregnant in a home or clinical setting without the need for any kind of ‘fertility treatment,’ some queer women do experience fertility problems. The question is, how does their experience

WINTER/HIVER 2013-14 • Creating Families

The LGBTQ Column Financial issues

was born] I went for the dye test and it was like agonizingly painful and he said, ‘You’ve got blocked tubes, the dye is just not going to go through.’ ” In this case, both women were able to be treated quickly, and each of them got pregnant.

Informed consent versus informed choice Another implication of our early entry into clinics is that often women who have no known fertility problems are subjected to tests and medical interventions designed for those who do. Clinics have a range of practices in relation to testing and interventions; and queer women clients have a range of feelings about this issue. Some clients welcome the tests that might provide valuable information about potential problems early on: “So we actually got a referral to a fertility clinic for cycle monitoring, a hysterosalpingogram and blood work. Let’s see what’s happening before we were actually ready to start trying, because I wanted to know, do I have the plumbing that might potentially work for that?” Others see no reason to do invasive tests without reason, and resent the extra time, and sometimes expense, involved:

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“My philosophy was – if there’s no problem, don’t go investigating it… ‘Cause they’re really uncomfortable tests.” “… then I had to have an ink test to see if my tubes were open, so they went through all the fertility procedures as if I had a fertility problem. There was no assumption that the fertility problem was just that we had no sperm… I never imagined that it would take six months to get to the actual point of insemination. It was a lot more technical than I expected and a lot more expensive than I expected.”

What these varied experiences point to is the value of, “informed choice,” a way of thinking and a paradigm that differ from that of, “informed consent.” Informed consent involves a patient agreeing to a procedure or medication recommended by another, usually someone in authority, an expert of some sort. As Spaeth (2010) puts it, “Consent implies a relationship based on power… and does not engender trust or make the patient feel cared for.”3 Informed choice, on the other hand, involves patients making autonomous decisions for themselves, based on the provision of full information. Queer women who enter fertility clinics, like all healthcare patients, want the opportunity to make informed choices about the tests and medical interventions they undergo.

The fact that the fertility clinic is often our entry point also means that we can’t “try quietly at home” for a while before incurring the time and expense of fertility ‘treatments.’ While costs are a barrier, and sometimes prohibitive, to all those who use the services of fertility clinics, queer people often incur these costs from the get go. This means that, much as we might like to, we do not always have the financial capacity to try every month. It is important to consider that some of us are living on a single income, and that as queer women we are systemically disadvantaged in the labour force in relation to men (i.e. no male income).

Support (or lack of support) from family and work Often those dealing with fertility issues count on ongoing support from family, friends and work mates. This, of course, is true for LGBTQ people as well, but sometimes our families are not supportive of our sexual orientations, gender identities, family configurations or choice to have children. This lack of support can become painfully heightened with the stress of infertility. One woman describes her partner’s mother’s initial reaction to their relationship and then to receiving the news that her daughter is pregnant: “Her mother was very upset when she found out about us, you know, she didn’t talk to me for a period of time and just was really not very nice… It took [her partner] a while to get pregnant [due to infertility issues] and we didn’t tell them about the process along the way, and then when we did they just couldn’t handle it… We phoned and there was like silence on the phone and then there was yelling and screaming and it was just horrible, I mean it was absolutely terrible. It was very unfortunate.” Similarly, because many of us are not able to be “out” at work, we must often remain silent with work mates and colleagues about

The LGBTQ Column Because we are entering a system set up to serve heterosexual, cisgender

pregnant. In some cases, this is true, but often it is not. Some queer women have no desire to become pregnant; and for some the idea runs counter to their gender identity and/or bodily experience.

couples dealing with

infertility, there is often a fuzzy line in our own treatment between ‘fertility’

An interracial couple, who ended up going to the United States to access a sperm donor of the racial background they desired, describes the assumption by clinic staff that they could just switch who was getting pregnant:

and ‘infertility.’ struggles with fertility, the birth or adoption of a child and other life-impacting events.

Have uterus ≠ Wants to get pregnant Sometimes, when one partner in a lesbian couple is experiencing fertility challenges, clinic medical staff assume that (lucky for them!) there is another uterus available, i.e. the other woman can attempt to get

“They said, ‘Why doesn’t [your partner] try and get pregnant instead, and then you can use a white donor and it won’t be a problem. But we already told her in the beginning that I don’t want to be pregnant, that wasn’t an option for us… It was interesting, it was like, ‘just because you have the capacity to, you should.’”

“My partner’s gender appearance is not very traditionally female and she kept kind of getting ‘sir’… She would never go to the washrooms there and the technicians called her ‘Poppa’ a couple of times, which bothered her. I would correct them sometimes but then sometimes she doesn’t want me to correct people because she gets embarrassed… The doctor did try and convince my partner to get pregnant, and she was like, No, I’m never doing that.” As the above quotes illustrate, it is incumbent on those working with queer women to refrain from making assumptions about people’s desires and preferences when it comes to their bodies and, in particular, to not assume that simply having the parts means you want to use them.

Negotiations with donors Another woman talks about the ways her partner’s gender is misrecognized in the clinic and, again, how it is assumed that they are interchangeable when it comes to conception:

Those inseminating at home with known sperm donors have usually had to engage in what are sometimes (though not always) awkward discussions with their donors about

Building families... ONE baby at a time

WINTER/HIVER 2013-14 • Creating Families

The LGBTQ Column “With the psych interview, they have a script and they have a protocol that is based on the assumption that it’s a man and a woman and one or both of them can’t have children for some reason.” Like other fertility clinic staff, counsellors need to take into account the specific needs and concerns of LGBTQ clients, and how these might differ from those of heterosexual clients.

A place to talk Dykes Planning Tykes graduates and their children

the details of sexual practices, requests for testing, and the day-to-day logistics of sperm donation and home insemination. The surfacing of fertility problems can mean further negotiations and requests, some of which can be sensitive and contribute to further awkwardness. Some participants in the COF study expressed the desire for a more formal setting (ie. a fertility clinic) in which to conduct negotiations with potential donors, have medical tests carried out and, when desired, access cycle monitoring in preparation for home insemination.

Counselling issues Anyone trying to become pregnant, and in particular someone dealing with fertility

issues, needs support to make informed decisions about options that have complex physical, emotional, financial and logistical implications. As one COF participant put it: “You have to think about these things, right? Like what are your personal boundaries? Will you do fertility-enhancing drugs? Would you go to IVF if you had to? Would you accept the new technologies where they select the sperm and insert it in the egg? How far would you go?” Most fertility clinics, when dealing with third-party reproduction, require that patients undergo at least one counselling session. While some counsellors are aware of and sensitive to the needs of LGBTQ clients, others are not:

Tara Sheppard,

B.A., M.M.F.T.

Ind Individual, ividual, Couple, Family & Gr Group oup Therapist

Therapy & counsel counselling ling services for people dealing with infertility infertility,, the effects effects of AR ART, T, and donor issues. Assistance in dealing with complex conflicts, so that you and your loved ones can enjoy life in the pr present, esent, and feel hope for the futur future. e. Downtown WINNIPEG location

www.tarasheppard.com www .tarasheppard.com

a.sheppard @ mts.net tel : 204.880.3285 tar tara.sheppard

Créons des familles • WINTER/HIVER 2013-14

LGBTQ people have historically been denied the right to have children and have had children taken away from them.2 One impact of this history is that much of the focus in recent years has been on creating LGBTQ-positive spaces where people can find the information, the support and the community they require in order to bring children into their lives. An unfortunate, though unintentional, effect of this focus has been a lack of discussion of difficult issues like infertility and pregnancy/infant loss. As Shira Spector puts it:

“We are in the midst of an LGBT baby boom, and where there is a baby boom there is infertility and pregnancy loss… One of the problems around infertility/pregnancy loss is this great quietness for all women. No one really wants to talk about it - it’s all so painfully icky and somehow viewed as self-indulgent to mourn one’s fertility or failed pregnancies. So it’s really quiet when it happens to you, except suddenly everyone has a story to tell you about someone suffering a miscarriage or hopeless fertility pursuit. It’s so common, why is it so quiet?” 4 Shira goes on to articulate what would help: “Here’s what I want for those of us who are struggling: support and love. I know that’s vague, but support and love anyway. The sound of our voices and our stories counted in, as common and

The LGBTQ Column Queer women want to be included in the wider circle of those with whom they share a common experience; and, at the same time, our particular circumstances,

love and practical assistance from medical practitioners, from friends and family and from our own communities. Queer women want to be included in the wider circle of those with whom they share a common experience; and, at the same time, our particular circumstances, family configurations and identities need to be recognized, acknowledged and respectfully held.

identities need to be and respectfully held. as much a part of the experience of childbearing as any, acknowledgement of our struggles, our courage and tenacity, research studies and access to information so we can make truly informed choices about reproductive technologies and their effects on women’s health, guidance in our own communities, and a place at the queer parenting tables.” (Spector, 2009, p. 80) What she is asking for makes sense for anyone struggling with issues of in/fertility: support,

Epstein, R., Marvel, S. Steele, L.S. (accepted August 2013). Sexual and gender minority peoples’ recommendations for assisted human reproduction services. Journal of Obstetrics and Gynaecology Canada. 3 Spaeth, G. L. (2010). Informed choice versus informed consent. Heltoen International: A Journal of Medical Humanities. 2 (2). (http://shar.es/KRAiV). 4 Spector, S. (2009) Red Rock Baby Candy in Epstein, R. (ed.) Who’s Your Daddy? And Other Writings on Queer Parenting. Toronto: Sumach Press.

family configurations and recognized, acknowledged

2 Ross, L.E., Tarasoff, L.A., Anderson, S., green, d.,

About the author Rachel Epstein has been an LGBTQ parenting activist, educator and researcher for over 20 years. She coordinates the LGBTQ Parenting Network at the Sherbourne Health Centre in Toronto and is currently completing her doctoral dissertation at York University. She is editor of the anthology Who's Your Daddy? And Other Writings on Queer Parenting (Sumach Press, 2009). References: 1 Epstein, R. (2009) Who’s Your Daddy? And Other Writings on Queer Parenting. Toronto: Sumach Press.

Still Trying is an informal support group for LGBTQ people who are in the process of trying to conceive. The group started as a community initiative, and is now run by the LGBTQ Parenting Network, Sherbourne Health Centre, Toronto. Our interest in supporting this initiative came from observing the overwhelming emphasis on the experience of cisgender heterosexual couples in most fertility-focused resources and support. Facilitator Dahlia Riback came to the group because she felt strongly that LGBTQ people have specific experiences of fertility and infertility. Together, we noted a lack of LGBTQ-specific fertility support that is inclusive of single people, couples and other family configurations. Participants in the group may or may not fit medical definitions of infertility, and, in fact, many do not. Our intent is to support all LGBTQ people in their fertility journeys, no matter how long or short or complex. Still Trying meets once a month, at Sherbourne Health Centre, 333 Sherbourne St, Toronto. Visit www.lgbtqparentingnetwork.ca/stilltrying for more information, current dates and times, or e-mail parentingresources@sherbourne.on.ca.

WINTER/HIVER 2013-14 • Creating Families

Dr. Suzanne Parenteau

What is the ideal frequency of intercourse during fertile days to obtain optimal conditions for becoming pregnant?

Dr. Suzanne Parenteau: Among the millions (from 100 to 500 million) of sperm cells released in every ejaculation, there are old ones (probably dead ones too) and younger ones, which are produced regularly and join the sperm pool. Masters and Johnson, wellknown researchers during the 1960s and 1970s, found that the ideal interval between two ejaculations to replenish and renew the stock of vigorous sperm cells is about 36 hours (one and a half days). However, it is important to remember that sperm is not the only factor needed for conceiving. If there is no egg around, the chances for a pregnancy are not very high…

Since the ovum survives only a few hours, what is most important for fertility are the signs announcing the pending ovulation. The main sign is

The Doctor’s Column the presence of cervical mucus at the vulva. This secretion originating from the cervix of the uterus feels increasingly wet and slippery as ovulation becomes closer. At this time in the woman’s cycle, it can stretch into more or less transparent threads. Not only is this kind of mucus an indicator of maximum fertility because it announces ovulation, but it also facilitates the transport of sperm from the vagina towards the ovum. The number of days during which a woman can observe this very fertile mucus varies from one day to one week. It is probable that this period is shorter in sub-fertile couples. There is no need to avoid intercourse between the beginning of the cycle and the appearance of the fertile signs, under the false impression that sperm will concentrate. Between two ejaculations, old sperm cells die and younger ones are generated to replace them. We know that the maximum concentration is obtained in one and a half days (36 hours). However, new information has been made available

by Australian researchers. During a recent scientific meeting, they suggested that according to a study they conducted on a sample of sub-fertile men, daily intercourse did produce a higher number of pregnancies. The tentative explanation offered is that the genetic material of sperm cells of those men may deteriorate the longer they remain in the male genital tract. There is no evidence that similar results would be attained in normally fertile men. So far, the study has not been published in scientific journals. On the other hand, overly frequent intercourse could deplete the number of sperm cells. It could be counter-productive, for example, to have intercourse morning and evening. Between these two extremes, couples must have some flexibility. You should have intercourse whenever you wish during the period with fertile signs, but, above all, be sure not to miss the day when cervical mucus is the most wet and slippery.

Dr. Suzanne Parenteau studied medicine at the University of Montreal. Her medical activities have been focused on health and prevention education in the field of human reproduction, through teaching, publishing, research and hosting seminars on fertility, natural family planning with Serena, marital life, sexology, pregnancy, breastfeeding and menopause. In addition to her accomplishments in Canada, she has worked as an international consultant in the areas of natural fertility and breastfeeding.

Créons des familles • WINTER/HIVER 2013-14

La chronique du médecin Q:

Quelle est la fréquence idéale des rapports sexuels durant les jours fertiles afin de créer les meilleures conditions pour obtenir une grossesse?

Dre Suzanne Parenteau : Parmi les millions de spermatozoïdes (de 100 à 500 millions) expulsés à chaque éjaculation, il y en a des vieux (probablement aussi des morts) et des jeunes, qui sont produits constamment. Masters et Johnson, chercheurs bien connus dans les années 1960 et 1970, ont trouvé que l’intervalle idéal entre deux éjaculations pour renouveler le stock de spermatozoïdes vigoureux est de 36 heures (un jour et demi). Cependant, il est important de se rappeler que le spermatozoïde n’est pas le seul ingrédient important. S’il n’y a pas d’ovule en scène, les chances de grossesse seront bien minces…

L’ovule ne survivant que quelques heures, les signes annonciateurs de l’ovulation prochaine sont d’une importance capitale pour la fertilité, le

principal étant la vulve de la glaire cervicale. Cette sécrétion émanant du col de l’utérus donne une sensation de plus en plus mouillée et glissante à mesure que l’ovulation approche et peut alors s’étirer en fils plus ou moins transparents. Non seulement cette glaire cervicale est-elle un indice de fertilité maximale du cycle annonçant l’ovulation, mais elle facilite aussi le voyage des spermatozoïdes du vagin vers l’ovule. Le nombre de jours où une femme peut observer la glaire fertile varie d’un jour à une semaine. Il se pourrait bien que chez les couples hypofertiles (en difficulté de conception) la durée soit plutôt brève.

Il n’est aucunement nécessaire d’éviter les rapports entre le début du cycle et les symptômes de fertilité sous la fausse impression que le sperme sera plus concentré. Entre deux éjaculations, les vieux spermatozoïdes meurent et des jeunes viennent les remplacer. Nous savons que la concentration maximale est généralement atteinte en un jour et demi (36 heures). Toutefois, des informations nouvelles nous arrivent de chercheurs australiens. Ils ont déclaré,

La Dre Suzanne Parenteau a étudié la médecine à l’Université de Montréal. Ses activités médicales se sont concentrées sur l'éducation à la santé et la prévention dans le champ de la reproduction humaine, à travers des activités d'enseignement, de publication, de recherche et d'animation sur la fertilité, la planification naturelle des naissances avec Séréna, la vie conjugale et la sexologie, la grossesse, l'allaitement, la ménopause. En plus de ses activités au Canada, elle a été consultante à l’international pour la fertilité naturelle et l’allaitement.

lors d’un congrès scientifique, qu’au cours d’une étude qu’ils ont menée sur un échantillon d’hommes hypofertiles, plus de grossesses sont survenues chez ceux qui avaient des rapports quotidiens. Ils attribuent ce bénéfice au séjour plus court des spermatozoïdes dans les voies génitales masculines : il y aurait moins de chances de détérioration génétique. Il n’y a aucune indication que le même résultat serait atteint chez des hommes normalement fertiles. À ce jour, cette étude n’a pas été publiée dans une revue scientifique.

D’autre part, les rapports trop fréquents peuvent diluer les spermatozoïdes. Il est contre-productif, par exemple, d’avoir des relations sexuelles matin et soir.

Entre ces deux extrêmes, les couples doivent exercer quelque flexibilité. Vous devriez avoir des rapports selon vos désirs durant la période fertile, mais, avant tout, assurez-vous de ne pas manquer le jour où la glaire est la plus mouillée et glissante.

DOCTOR IS IN LE MÉDECIN VOUS ATTEND

WINTER/HIVER 2013-14 • Creating Families

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