__MAIN_TEXT__

Page 1

conneXions www.fetalhealthfoundation.org

linking the medical & personal worlds

spring 2017

of fetal syndromatic issues

designing for the patient's journey

nutrition & exercise tips

special delivery:

capture it:

realizing the vision...

asking for help while on bedrest

a case on spina bifida

1

near + far connexions

a memorable birth:


Tiny Patients, Big Hope

The Johns Hopkins Center for Fetal Therapy is one of the few in

the Nation offering fetoscopic treatment of twin-to-twin transfusion syndrome (TTTS), congenital diaphragmatic hernia (CHD), spina bifida, lower urinary tract obstruction and state-of-the-art maternal and pediatric care under one roof. Our treatment team has extensive experience and a proven track record of successful treatment of rare and complex prenatal conditions. A leader in the field of fetal therapy, we offer breakthrough treatments and personalized care for you and your baby each step of the way.

Call: 410-502-6561 or visit hopkinsmedicine.org/fetal-therapy


a look at the inside... 7

the brianna marie foundation: how a little girl's legacy lives on

9

surviving cleft palate: beyond the diagnosis

11

spotlight on 2016 research grant recipient: fetal pulmonary disease

13

nutrition + exercise tips for breastfeeding moms

17

special feature: midwest fetal care center physician explains open fetal surgery

21

to have one or wait? handling a baby shower after a diagnosis

22

dealing with loss: what families wish you knew

24

special feature: colorado fetal care center

26

realizing the vision...near + far

30

creature comforts: a look at fetal center design for comfort and convenience

35

get out & go! tips for getting out with a newborn in tow

38

tips for taking care of you...

42

special feature: expert care at cincinnati fetal center

47

great candy run hits all time high

49

what to ask during a high-risk pregnancy

53

help for bedrest (and how to ask!)

59

memorable birth photography

60

special delivery: from spina bifida to living miracle

63 65

21

30

35

creative ways to support the foundation beyond barriers: fetal centers with a purpose + international reach expands

9

cover photo courtesy of firewife photography

59 connexions

3


letter from dalia... Let me introduce myself...I'm Dalia El-Prince, Executive Director at the Fetal Health Foundation. It’s hard to believe a whole year has passed since the first issue of Connexions was released last spring. We’ve been busy here at the Foundation expanding our reach beyond the U.S. borders, working with physicians and patients from around the world. In 2016 alone, we reached 75,000 users from 186 countries, supporting thousands of families through our website and online support group, connecting them to fetal centers around the world. This is very satisfying for me personally to have been a driving force behind this effort. We continued our efforts of supporting fetal surgery, but expanded our reach to global fetal centers to ensure the value of our research money goes as far as possible. Thanks to our partnership with the Brianna Marie Foundation, we funded an amazing medical research grant for $50,000. This brings us to $125,000 in the last 3 years towards fetal syndrome research, with the impact for families going far beyond the dollar amount. I want to take a moment to first thank YOU for taking the time to page through this issue to learn about the advancements in fetal therapies, fundraising efforts for the Foundation, personal stories of some of the families we’ve had the privilege to come in contact with, and so much more. I also want to thank all of our volunteers, supporters and fundraisers; we couldn’t do this without you. With that being said, we are sad to say goodbye to a special, longtime volunteer and board member, Tammy Smith, who has been with this organization from the very beginning. You may have even seen her personal article in the first issue of Connexions, as Tammy celebrated her survivor, but mourned the loss of her angel to TTTS. She played a critical role in our annual 5K events, she has been an active voice in support groups on Facebook, and so much more. We have been honored and blessed to have benefited from her passion and dedication for all these years and wish her nothing but the best. We hope you enjoy our new addition of Connexions and keep in touch by liking us on Facebook, following us on Twitter and Instagram, and signing up for our monthly newsletters and updates. ~Dalia

Contributors: julie mcCaffrey michelle somers paula yost schupp lonnie somers dalia el-prince aran hissam tamara duker freuman jane goodrich alyssa keel jessica therivel talitha a. mcguinness susan rassette

Connexions is an annual digital and print publication of the Fetal Health Foundation, a nationally registered 501(c)(3), non-profit organization located in Colorado.

You can follow the Foundation through monthly newsletters and social media.

4

connexions


register t oday!

helping families realize

the sweetest finish ever! 2017 events: DENVER, CO & MINNEAPOLIS, MN


the brianna marie foundation: how a little girl's legacy lives on

by aran hissam

6

connexions


I

Imagine this… A few days before Thanksgiving and you are counting down the hours to go to your ultrasound appointment because it’s the day you will find out whether you are adding a third boy to your family or perhaps a little princess. The pregnancy was progressing normally, all tests and results were as they should be, and you were treasuring this time because you knew it would be the last time you would be having a baby (three was enough for me). You are laying on the ultrasound table and you know based on the ultrasound technician’s look something isn’t right. She calls the doctor into the room and as you lay on the table, hear your baby’s heart beat and watch the kicks on the screen you are told… “Your baby will not survive --- she (great way to find out, huh?) has fetal hydrops or fluid building in her lungs --- and there is nothing you can do to save her." My name is Aran Hissam and this was a day in my life that I will never forget from back in November 2011. That day changed who I was. It was the day that started the biggest, longest, and hardest fight of my life, a journey that made me who I am today. After leaving this doctor’s appointment, I traveled the country trying to find a way to save my child. Test after test came back normal, so I knew if we could just get her lungs to grow, after she was born, we could help her. We were told by multiple doctors to terminate the pregnancy, a choice we knew was not ours to make but God's, so we did what most parents do. We researched,

Holding your baby as their heart stops beating, leaving the hospital empty handed, and then being expected to return to your “normal” life is something no parent should ever experience. asked questions and prayed. In January 2012, we met Dr. Quintero, an amazing fetal surgeon who was willing to help us. He never gave us unrealistic hope, but he fought alongside us every step of the way and we knew that our daughter had a chance with him on our journey. This was the first time I really understood what fetal surgeries were. Until meeting him, many of the doctors we worked with didn’t even know that this was an option for our case. It was mind-blowing to me that a doctor could operate through ultrasound on my daughter while she was still in my belly. I ended up having a number of fetal surgeries to try to help my daughter’s lungs grow. There were many highs and lows throughout this pregnancy --- wonders if I had done something wrong, guilt over being away from my boys during the surgeries, and stress over had we moved fast enough to find this intervention to develop Brianna’s lungs. On March 16, 2012 Brianna Marie was born at 36 weeks and was with us for the most memorable 15 hours of my life. She ultimately passed from pulmonary hypertension due to her lack of lung tissue. To put into words what it is like to lose a child is very difficult and all I can say is if you

haven’t experienced it, it is unimaginable. Holding your baby as their heart stops beating, leaving the hospital empty handed, and then being expected to return to your “normal” life is something no parent should ever experience. The reality is that it happens every day and looking back on my journey and experience, it was something I did not want any parent to have to feel like they were experiencing alone. I knew I had to do something, I just didn’t know yet what that "something" would be. In September 2012, my husband and I established the Brianna Marie Foundation. Our mission is “To be thankful, to be purposeful, and to give hope.” We established the foundation to raise funding and awareness of fetal hydrops and fetal surgeries. We felt that far too many people (and doctors) did not know that fetal surgeries were options for many patients when a negative diagnosis is given. They certainly can’t save all babies, but if we could help in just saving one, our journey would have even more meaning. I didn’t know anything about running a foundation or fundraising (my background is in pharmaceutical sales and my husband’s is in finance). I only knew that doing this in

connexions

7


my daughter’s honor was all I needed and little by little, support started to pour in. Running turned into my “escape”, my way to think, strategize, and pray, so when a friend recommended putting together a 5K for the Foundation, it was the way to go. After the Inaugural Brianna Marie Foundation 5K, my fetal surgeon introduced me to Lonnie Somers, Founder of the Fetal Health Foundation, who has taken me under his wing and been a mentor, advocate, and friend. We both have the same mission --- to help give every baby that is given a negative diagnosis a fighting chance. With his knowledge on fetal conditions, running a successful and honorable non-profit, and skills in race management, I lean on him for advice and guidance. Since the field of fetal surgery is so small and funding so scarce, I know that every penny is treasured. For the longest time, my husband and I were faced with decisions on how to best allocate funds to areas that needed it most in saving these precious lives. We decided to partner with the Fetal Health Foundation with some of our funds based on their experience in issuing and reviewing research grants. We were honored when they chose to name one of their grants The Brianna Marie Memorial Grant and

asked us to be on the Grant Advisory Board. We are now able to help review applications for some of the top fetal research. I can’t tell you what it means to see grant requests come in with Brianna’s name on them with doctors from around the world requesting funds to do research to save little lives just like hers. One of the aspects that I am most humbled by on our journey with Brianna are the friends made along the way. This has often been in the form of parents that have reached out to our Foundation for help, guidance and sometimes a shoulder to cry on. It has been so special connecting with babies and families that come to our event each year to honor their angels, and volunteers and friends whose support and love make me want to work that much harder each day to continue on our mission. I’m not a doctor, and I'm not a researcher. I'm just a mom that wants all parents to know their options and not feel alone on such an often isolating journey to save their baby's life. As a parent, I still wonder many days what my daughter would look like or be doing five years later. Would she like dance or enjoy throwing a baseball, like her brothers? Until that day when I meet her again, I live each day to make her proud.

a bit more... Since incorporation, the Brianna Marie Foundation has raised over $200K that is being used for a number of different projects, including the 2015 and 2016 Fetal Health Foundation’s Brianna Marie Memorial Grant. Key research funded includes studies and clinical trials for treatment on spina bifida, and more recently, on congenital diaphragmatic hernia or cdh, with an ultimate goal of improving fetal lung development. The Foundation also recently supported phase two in a trial with Dr. Quintero's team in looking at how to better manage complicated monochorionic multiple pregnancies. More on the Brianna Marie Foundation can be found at: www.briannamariefoundation. com. The 5th Annual Brianna Marie Foundation 5K was held on March 11, 2017 in Melbourne, Florida.

Aran graduated from Florida State University with a bachelors in communication and later received her MBA with a marketing specialty. For the last thirteen years, she has worked part-time as

a pharmaceutical representative and most recently, the Founder of the Brianna Marie Foundation in honor of her daughter that passed away in 2012 from a fatal fetal illness known as Fetal Hydrops.

8

connexions


surviving cleft palate: beyond the diagnosis

by paula yost schupp

It was the Fourth of July weekend. I was sitting in Barnes & Noble talking to a friend when my cell phone rang. It was my gynecologist. She told me to go immediately to the Maternal Fetal Medicine office because she had called ahead and booked an appointment for me. An issue had arisen on my most recent genetic test and she wanted me to get a high definition ultrasound. I felt numb. This was my first pregnancy. I was thirty-three years old. I desperately wanted this baby. It had taken me over a year of trying to get pregnant. I had done everything I knew to do right. I was on prenatal vitamins. I ate healthy. I followed all the rules. I was well educated and hyper-prepared. I was shocked when my doctor told me my baby had a complete bilateral cleft lip

and palate. Honestly, I was not sure what that was. I thought I remembered seeing some pictures at my dentist office, but I truly did not know. My doctor explained that it meant my son’s upper lip and the roof of his mouth had not formed. No one knew why. He educated me on the possibility of the cleft being isolated versus being caused by a syndrome, and asked if I wanted additional genetic testing. I decided that I wanted to know everything I could know about my son’s condition. I knew that being in the dark would just cause me more worry and I wanted to know exactly what I was facing so I would know how to care for my little boy. I had an amniocentesis, and my son’s cleft turned out to be isolated. The diagnosis was very hard for me. I wanted to be in as strong

of an emotional place as possible before my son was born so I began seeing a counselor. I was worried about what my son would look like and what his care would involve. I felt helpless and inadequate. I worried that I had done something wrong and had somehow caused this. I cried for what the future could hold for my son and what history had held for these people. I could not sleep, but I learned skills in counseling that have aided me in parenting him to this day. I refuse to let my son’s craniofacial difference become a lifelong disadvantage. One of the things I wanted most was to get my son’s face corrected as quickly as possible. I worried about bullying, about his speech, about everything. I learned that operating too early had several potential side effects.

connexions

9


Exposure to anesthesia prior to six months of age and then repeated exposure to anesthesia can cause trouble with learning and brain development. I consulted with a pediatric plastic surgeon, experienced in cleft palate repair. He told me that he would not operate until the child was over six months of age, unless the child physically could not eat. He stressed the importance of getting the child to eat and doing tummy time so that the cranium will be ready for surgery. I studied up on how to feed my baby. I mourned being able to breastfeed and broke down in tears in a parenting class when the topic arose. I resolved to at least pump milk if I was able. It is highly recommended that parents study up on the various methods available to feed a cleft palate child. Several different types of bottles exist for cleft palate babies and YouTube video clips explain how to use each one. Some children respond well to one type of bottle over another. As every child and every craniofacial difference is different, it does take effort to be prepared for what you need. Often, babies do well initially on the Haberman bottle, but graduate to the Pidgeon bottle as they age and gain strength in their mouth muscles. Parents should be told that these bottles are not available in stores; they must specially order them. Parents must order them before birth and bring them to

I mourned being able to breastfeed and broke down in tears...when the topic arose. the hospital in their bag, as the hospital will not be guaranteed to have them. While it is true that the hospital may have everything for most newborns, it is likely untrue for children with any form of abnormality. Parents need to get used to the idea of being their child’s strongest advocate and greatest expert. Information about the Children’s Development Services Agency (CDSA) should also be available to cleft palate parents. I felt very underserved because no one told me about that option until my son was eight months old and I was struggling to transition him to solids. I would stick a spoon in his mouth and the food would run out of his nose. I lived in continuous fear of him choking. Sometimes, I did not feed him as I should out of sheer fear. The CDSA sent a speech therapist to my home who taught me how to feed him. She helped me get him used to using the spoon and a small cup. She also recommended that I purchase a z-vibe . The z-vibe helped to raise my son's overall oral awareness. I also used the CDSA’s speech therapist when my son learned how to speak.

As of today, my son is thriving. He has had two surgeries, one at ten months and one at eighteen months. He is getting ready to have a third surgery this year. He will be three years old. This surgery is a bone graft to make sure his teeth grow properly. He will have it after many months in a palate spacer. Another common misconception is that cleft palate just makes your child look a little funny, but that it is all fixed in one surgery. Nothing is farther from the truth. My little one is likely to have multiple surgeries and orthodontic procedures all throughout his childhood. The more parents are educated about the realities of their child’s condition, the better they will be able to manage it. Looking back, sometimes I think I read so much that I made myself a little sick with worry. However, being as educated as possible has likely led to the best possible outcome for my son and has stayed consistent with my goal of making sure his craniofacial difference was not a lifelong disadvantage. I was pleasantly surprised when many of the things I was prepared for wound up not happening in our case. Being prepared for the worst gave me the knowledge to manage my son’s needs. If facing a cleft palate diagnosis, read. Read everything you can find and if you feel like you cannot handle what you are reading, seek out the assistance of a family support network or professional counselor to help you. You and your baby will benefit greatly from it.

Paula Yost Schupp currently serves as the Chair of the Child Protection Team in Cabarrus County, NC. In addition to being a federally licensed U.S. Patent and Trademark Attorney, she holds a Masters in Clinical Mental Health. Paula is happily married to her husband of six years. They have three children, one adopted and two from scratch. To learn more about Paula, visit countrylawshack.com.

10

connexions


2016

research grant recipient Research for Fetal Pulmonary Disease Gains Traction with Grant The Fetal Health Foundation (FHF) named Dr. Deprest of the Katholieke Universiteit of Leuven (Belgium) and the University College of London Institute for Women’s Health the recipient of the 2016 Brianna Marie Memorial Research Grant. Now in its third year of administering and awarding grants for fetal health research, FHF expanded its scope to include research projects from international centers and combined funds to allocate $50,000 to the grant recipient in order to increase the impact of the grant. The funds awarded to Dr. Deprest’s study will be used to target prevention of congenital diaphragmatic hernia (CDH), an anomaly that disturbs lung development during fetal life. According to Deprest, 30 percent of newborns diagnosed with CDH die due to pulmonary complications. His research team believes that the combination of current postnatal therapies with prenatal strategies represent the future of CDH management. “Despite the progress in neonatology, too many newborns die due to respiratory insufficiency

Dr. Deprest's team of the Katholieke Universiteit of Leuven (Belgium) and the University College of London Institute for Women’s Health

and pulmonary hypertension, and many others suffer significant pulmonary disease,” Deprest stated. “With this research grant, we will continue to investigate the efficacy of maternallyadministered sildenafil, a drug that selectively vasodilates the pulmonary arteries, to prevent pulmonary hypertension in newborns with CDH.” An international leader in CDH research and treatment, Dr. Deprest is best known for his work studying and advancing tracheal occlusion techniques and equipment that would allow sufficient in-utero lung development to sustain life after birth. Under his consultation, several medical centers in the US have recently received FDA approval to pursue a feasibility study of fetoscopic endoluminal tracheal occlusion (FETO) for serious CDH cases. The Brianna Marie Memorial Research Grant was established as part of the Fetal Health Foundation in 2014 with a generous donation and the continued support of the Brianna Marie Foundation in honor of Brianna Marie Hissam. Diagnosed with fetal hydrops, a condition caused when abnormal amounts of fluid build in two or more body areas of a fetus or newborn, Brianna Marie was born March 16, 2012, and only lived 15 hours. According to Dalia El-Prince, executive director of FHF, the foundation received numerous worthy grant applications for the award. “It’s exciting to see the groundbreaking work that is occurring in the field of fetal health medicine,” says El-Prince. “Choosing just one study to fund was difficult. Ultimately, our hope is to assist Dr. Deprest’s team in taking his study to the next level to overcome this devastating birth defect and spare its monumental emotional toll.”

To learn more about the Fetal Health Foundation's Research Grants, past grant recipients, focus areas, and how or when to apply, visit fetalhealthfoundation.org. connexions

11


nutrition & exercise

for breastfeeding moms by tamara duker freuman

12

connexions


a

s an expectant mother of multiples, you’re entering into a sisterhood bound by the unparalleled joys — and challenges — of raising twins, triplets or even quads. But if you’re also planning to breastfeed your babies, consider yourself among an even more select group of new mothers. Breastfeeding multiples — whether partially or exclusively — isn’t easy, but it is certainly possible. Knowing how to best care for your post-partum body through diet and exercise can help improve the likelihood of success in meeting your breastfeeding goals.

Eat up!

If you thought your multiples pregnancy was a calorie-fest, then welcome to lactation! Exclusive breastfeeding requires far more than you needed during pregnancy — at least 500 extra calories per day…per baby! As eager as you may be to lose your pregnancy weight, breastfeeding is not the time to follow a restrictive, low calorie diet. Research shows that low calorie diets often result in reduced milk supply — a particular concern for nursing moms with more than one mouth to feed. Besides, breastfeeding multiple babies is probably the only opportunity you’ll have in your life to eat anything you want… and still lose weight without trying! Many expectant mamas plan ahead so that they won’t need to worry about food once their babies arrive. For example, you can batch cook and freeze hearty meals like stews, chili, lasagnas and casseroles so that a quick, nutritious meal is always

on hand. Some parents create online meal registries, like Mealbaby or Mealtrain, to help friends and family coordinate meal delivery for those hectic first few months. Using grocery delivery services is also a great way to keep the fridge stocked with nutritious staples without having to go food shopping. When thinking about pantry staples, consider foods that can be eaten one-handed or with a spoon — like yogurt, peanut butter sandwiches, thick stews and oatmeal. After all, chances are you’ll be holding a baby when it comes time to eat!

Stay hydrated. Breastfeeding

infants drink 25-30 ounces daily, so nursing twins means that about seven cups of fluid will exit your breasts daily (scale that up if you’re breastfeeding triplets!). This fluid requirement is in addition to the several cups per day you require to meet your own body’s needs. In other words, if you’re not eating or sleeping, you probably should be sipping. All fluids count toward meeting your needs — including coffee, tea, broths and soups. Even watery foods like watermelon, Jell-O, popsicles and cooked cereals will make a contribution. Try keeping a pitcher or large refillable water bottle next to your preferred nursing station so you can sip on liquids while feeding your babies.

Beware of unnecessary diet restrictions. Busy new moms

have a hard enough time feeding themselves, so adding unnecessary diet restrictions to the mix just makes things more difficult. Contrary to Internet lore, avoiding certain

foods during lactation does not help prevent food allergies in babies (and in fact, may have the opposite effect), nor will it improve gassiness or discomfort in colicky babies. Newborn babies are gassy, and this is a function of their immature digestive systems, not the result of anything in the mother’s diet. “Gassy” foods like beans and broccoli — or even spicy foods or dairy — have no bearing on a healthy newborn’s digestive function. Breastmilk is generated onthe-spot in a woman’s breasts, and there is no mechanism by which gas generated in mom’s own intestines from her diet can travel through the blood, into her mammary glands and transfer itself into baby’s milk! One exception to the rule is in cases where babies have an actual allergy to a food in mom’s diet (most likely cow’s milk), a situation that affects a small minority of infants. In such cases, symptoms are more likely to be rashes, vomiting or reflux, diarrhea or failure to gain weight. There are no benefits to avoiding spicy or pungent foods if you enjoy them, either. While compounds from foods in mom’s diet may affect the flavor of breastmilk, this phenomenon may actually facilitate acclimation and acceptance to the family’s usual diet by infants with a developing palate. So indulge in all the asparagus, wasabi, garlic and Indian food you like!

Safety first.

Virtually all of the food safety restrictions from pregnancy are relaxed during lactation: favorites like

connexions

13


sushi, deli meats, young cheeses and coffee are all safe to enjoy again. However, a small handful of safety-related considerations persist during lactation due to the potential effects of certain food-borne compounds on a baby’s developing nervous system. These include alcohol, mercury and endocrine-disrupting chemicals like Bisphenol-A (BPA). One to two alcoholic drinks per week is considered safe while lactating, but experts advise limiting intake to a single drink in a sitting and allowing a full two hours to pass between drinking and nursing. Also, be aware that even trace amounts of alcohol in breastmilk can interfere with babies’ sleep, and newborns are more sensitive to alcohol exposure than older infants and toddlers. To help protect nervous system development, limiting your intake of high mercury fish — as you did during pregnancy — remains prudent. If you buy canned foods like soups, beans, tuna and tomatoes, look for brands that use BPA-free can liners, including Eden Organics, Muir Glen, Amy’s Kitchen, Native Forest, Wild Planet and Vital Choice. Products sold in aseptic tetra paks are also BPA-free and safe to use during lactation.

to keep up with the additional energy demands of exercise are the two primary concerns when considering a return to the gym. When calories are in short supply, the body diminishes the quantity of breastmilk it produces — not the quality of it. Therefore, a rigorous exercise regimen that produces a significant calorie deficit may adversely affect the amount of milk you produce. Similarly, poor hydration from excessive sweating can also reduce the amount of breastmilk you produce. For these reasons, light physical activity that focuses on fitness, strength and stress relief (i.e. walking, yoga or pilates) may be more compatible with your demanding lactation regimen than intense workouts like running, interval training and spinning. This rings true at least in the first several months of breastfeeding before your supply is wellestablished. It’s a huge challenge to prioritize self-care when faced with the overwhelming task of caring for your newborns, so enlist help from your partner, relatives and friends in keeping yourself fed, watered and rested. Raising multiples is a marathon — not a sprint — so consider taking care of you as a form of endurance training!

Ease into exercise.

Producing over 1,000 calories worth of milk daily, you’ll burn more by breastfeeding than you could ever expect to walk off on a treadmill. That’s why most nursing moms of multiples lose a substantial amount of baby weight without ever donning a pair of sneakers (let alone a bra!). That’s a good thing, since breastfeeding multiples tends to be a round-the-clock enterprise for the first several months, one that leaves little time and energy for the gym. As your babies grow and the demands of nursing subside, you may find yourself ready to get moving again. Protecting your hydration status and eating enough

Tamara Duker Freuman is a registered dietitian who specializes in medical nutrition therapy for digestive disorders and is an expert in celiac disease. In addition to her clinical work, Tamara blogs for US NEWS & WORLD REPORT’s eat + run health page and hosts a popular blog devoted to healthy eating and gluten-free living.

14

connexions


tucker planck 8/29/16-8/29/16 iugr

brianna marie hissam 3/16/12 fetal hydrops

angela kothe 7/2002 ttts

nicholas smith 12/11/14 ttts

walter blake

6/25/08 - 10/18/08 ttts survivor died of infection

john bennet felty 11/18/03 ttts

you are

not alone...

fetalhealthfoundation.org 15

connexions


Lexi & Katelyn, 17 TTTS Survivors

James & Miles, 9 TTTS Survivors

16

connexions


special feature

Midwest Fetal Care Center physician explains open fetal surgery

The Midwest Fetal Care Center is proud to announce a new open fetal surgery program. The Midwest Fetal Care Center, a collaboration between Children’s Minnesota and Allina Health, started in 2008 and opened a new facility – the Michael and Ann Ciresi Midwest Fetal Care Center – last year, in 2016. This new program allows moms and families in the Upper Midwest region access to advanced fetal care center services closer to home. Dr. Joseph Lillegard, pediatric and fetal surgeon and director of research at the Midwest Fetal Care Center, explains more about the new and exciting open fetal surgery program, one of a few of its kind, and the Midwest Fetal Care Center’s services below. Q: What is open fetal surgery? In open fetal surgery, a fetus is partially exposed from the womb allowing for surgery to be performed. After completion of the surgery the fetus is placed back in the uterus for continued growth and development. Ideally babies will stay inside the uterus until 36 weeks gestation is reached. It’s an advanced fetal surgery procedure that fewer than a dozen centers in North America routinely perform. The surgery requires a large and skilled clinical team – including fetal surgeons, neurosurgeons, maternal fetal connexions

17


medicine specialists, nurse specialists, anesthesiologists and more. Q: What types of conditions does the Midwest Fetal Care Center’s open fetal surgery program treat? The Midwest Fetal Care Center open fetal surgery program performs open fetal surgery for select cases of spina bifida, including myelomeningocele. Other indications include rare, large tumors that affect the developing fetus' ability to survive. Q: What is spina bifida? Spina bifida occurs in the womb when the spinal column doesn’t form and close completely, which leaves the spinal cord and nerves exposed at any level along the spine. This can cause traumatic injury to the spinal cord, a buildup of fluid in the brain, and other significant physical and neurological damage that is present at birth, severely impacting the life of the child. The cause of spina bifida is related to interplay between genetic predisposition and the environment. Q: How is spina bifida detected in-utero? During pregnancy, spina bifida is typically diagnosed by an ultrasound. If a birth defect such as spina bifida is suspected, expectant families are referred to a tertiary fetal care center like the Midwest Fetal Care Center for additional testing to confirm 18

connexions

the diagnosis, educate the family about the diagnosis, and work with them on a care plan for both the mom and baby. Q: Why is prenatal repair for spina bifida recommended for some cases? Research demonstrates that although open fetal surgery is not a cure for spina bifida, it can yield significantly better results than traditional postnatal repair. It can dramatically reduce the effects of the condition by reducing the shunt rates related to hydrocephalus by 50 percent, improve and reverse the hindbrain herniation, improve neurocognitive function, and significantly improve unassisted ambulation rates. When the diagnosis is confirmed, a cross-collaboration of specialists from the Midwest Fetal Care Center meets to review the case and determine the best treatment options for mom and baby, working closely with the family throughout the entire care process. This includes a large group of clinicians, such as fetal surgeons, neurosurgeons, maternal fetal medicine specialists and neonatologists, as well as care coordinators, social workers and ethicists. Q: What happens to the mom and unborn baby after the surgery? What’s the plan for delivery and immediately after birth? For optimal outcomes, the surgery is usually done between 23 to 26 weeks gestation.

In open fetal surgery, a fetus is partially exposed from the womb allowing for surgery to be performed. After completion of the surgery the fetus is placed back in the uterus for continued growth and development.

Following the surgery, expectant mothers are observed in the hospital and put on bed rest for several days to continue monitoring post-surgery results and vitals. Most are then discharged to continue their pregnancy at home with limited activity and scheduled weekly ultrasound appointments. The goal is for expectant moms to make it to 36 weeks gestation,


at which point the baby is delivered via Cesarean-section. After birth, the baby is assessed by a variety of specialists such as a neonatologist, orthopedic surgeon, pediatric surgeon, neurosurgeon and urologist. If the baby makes it to 36 weeks for delivery, they can typically go home after a five to seven day stay in the hospital. Q: How many open fetal surgeries has the Midwest Fetal Care Center performed to date? The Midwest Fetal Care Center has performed several successful open fetal surgeries in its first year of the program. It is estimated that there are 60 to 100 pregnancies annually complicated by spina bifida in the Upper Midwest alone. Nicole Carlin and her daughter, Clara, were one of the first open fetal surgery cases performed at the Midwest Fetal Care Center. You may read more on their story here. (page 60) Q: Looking ahead, what excites you about fetal medicine and the progress made at the Midwest Fetal Care Center? The goal in the near future is to advance prenatal diagnosis and fetal medicine so that clinicians can treat conditions like spina bifida using minimally-invasive techniques such as operative fetoscopy. Operative fetoscopy is a minimally invasive surgical intervention that is

already performed for other conditions, such as Twin-toTwin Transfusion Syndrome (TTTS), at the Midwest Fetal Care Center. Q: Why choose the Midwest Fetal Care Center? Our outcomes: we have some of the highest survival rates and lowest rates of post-operative complications as reported in literature. Additionally, for premature babies who require surgery, we have one of the lowest rates of surgical complications coupled with neonatal survival outcomes that are among the best in the country. Coordinated and seamless care: Additionally, our coordinated care approach puts mom and baby at the forefront. From surgery to

coordinating appointments to working with specialists, nurses, perinatal social workers and others, families receive seamless care from diagnosis through treatment and after-care until delivery and even beyond. Advanced prenatal intervention: As a comprehensive treatment destination for developing babies and their mothers, the Midwest Fetal Care Center offers a rarity. It is one of less than a dozen centers in North America that routinely perform fetal surgery to treat complicated diagnoses such as severe forms of spina bifida. To learn more about the Midwest Fetal Care Center's comprehensive care for babies before birth, and specifically, its newer open fetal surgery program, visit them online at midwestfetalcarecenter.org.

(left to right) Brad Feltis, MD, PhD, David Lynch-Salamon, MD, Marijo Aguilera, MD, and Joseph Lillegard, MD, PhD connexions

19


to have one or wait?

handling a baby shower after a diagnosis by michelle somers

20

connexions


Baby showers. They are filled with soft colors, friends and family, and lots of oohs and aahs. They are almost a rite of passage for all pregnant moms, especially those having a baby for the very first time. The idea behind them is so simple, innocent and well-meaning, but for those faced with a fetal syndrome, the simple and well intentioned baby shower can suddenly become one more stress on already burdened shoulders. Perhaps the shower is already scheduled and the organizing well under way when you find out your pregnancy is in trouble. Do you call your well intentioned friend or family member and ask them to postpone or cancel it? Do you let it go on as planned? If so, do you attend? What if you can’t attend because you are on bedrest? Should it be postponed until the baby(ies) arrive? There are so many questions and yet no right or wrong answer to any of them. If considered a high risk pregnancy, or facing or recently having received a fetal syndrome diagnosis, you may want to consider the following to help you find the right answer for you:

Examine your energy level.

Are you prepared to be peppered with questions about how things are going and how you are feeling? Even the most well-meaning comment or question can be hurtful when we are exhausted or unsure of the situation at hand. On the other hand, maybe you draw energy from knowing so many

people are thinking and/or praying for you. If that is the case, you may feel comforted being pampered by a shower and it may help you feel some semblance of normalcy during what may be a very trying time for you and your family.

Understand your emotions.

While many of your closest friends and family may have some idea of what is going on with your pregnancy, they do not truly understand the spectrum of emotions you may be feeling on any given day. Everything from excitement and joy to fear, anxiety and curiosity at how it will all turn out cross your mind and influence your emotions with each step of the journey. If you want to have a shower, just be prepared for any of these emotions to surface when opening gifts or being asked questions about your situation.

Be prepared to talk...or not. Your pregnancy and current situation is likely new to most who move within your circles. While you may have shared some details with your family and closest of friends, it goes without saying that if you plan to have a baby shower, those in attendance may be bold enough to ask questions. Of course, you can answer them to the best of your ability, hopefully satisfying their curiosity and care, or you can politely ask them to respect your privacy, as you do not want to or feel comfortable discussing it until you know more.

Consider a welcome change.

If you've been secluded to your

house by bedrest or taking an early leave absence from work, a baby shower may be just what you need to help lift your spirits. It's easy to get caught up in the worry that comes with a high risk pregnancy when you're not able to see and socialize with people or go about your normal routine. Take advantage of the shower and enjoy catching up with everyone who is dearest to you.

Know that they care.

Regardless of what is going on with your body and through your mind at this juncture, if family and friends are wanting to host a baby shower in your honor, they are only doing so because they care. It is a rite of passage to celebrate the mother and new baby. Instead of being bombarded with the uncertainty, they only want to help you welcome your new little one into the world and this is one small way to be part of your special moment at this point in your life. Whether that is by offering brunch and a few, special gifts, or a full on party with mountains of diapers and wipes, clothing in every size until they are walking, bedding and blankets galore, and perhaps even equipment to help you get out and about once the baby is born, just say "thank you" and relish in the idea that you and baby are loved.

Move that mountain.

Perhaps our overburdened shoulders and stressed mental state are making a mountain out of a mole hill in thinking so hard about this at all. After all, a baby shower is supposed to be fun --- contd. pg. 36

connexions

21


dealing with loss: what families wish you knew

Do you have a friend or family member who lost their baby or babies? Do you struggle with knowing what to say and how to act around them? Many families go through this loss, and we asked them to share what they wish their family and friends knew. 1 – Parents who have lost a child are still parents. One mom who lost both her twins to TTTS bravely wrote the following on Mother’s Day: I am a mother. Today, in our own private way, I will celebrate Mother’s Day. If we happen to cross paths, don’t be afraid to say Happy Mother’s Day to me. Yes, it is sad, and yes, I may tear up. But you would not only be honoring me as a mother, but remembering my two little girls. (Click here to read her story) 2 – Put these parents, and their needs, first. Everyone has different needs. Find out what they are, and be there. Opinions and advice probably will not be well received during a singular grieving process. It’s about them, and only them.

by kinan copen

22

connexions

3 – Everyone heals differently and on a different timeline. Allow them to grieve and take steps when they are ready. The healing never ends, and there is


no time when it is appropriate to expect that “they should be over it by now.” They work hard to get up every morning and make it through the day. Support them during the long process. 4 – Time heals, but you never forget your angel child. We often hear from these moms that although time heals, the passage of time doesn’t mean they are now “okay.” Nor does having other children diminish the loss. As one mom who lost her baby over 30 years ago put it, “My baby will always have a birthday.” 5 – Help them remember. It may be difficult for a parent to manage the loss, but she or he will one day want to remember. Take pictures, capture moments, and hold on to precious remembrances even if the parent isn’t ready to do so. In all likelihood, the day will come when they will appreciate the memories. One mom who experienced a loss 25 years ago tells us that her biggest wish today is some sort of remembrance. She didn’t capture photos or any items to remember her baby. Another mom who recently lost her precious babies told of how her family remembers twins Riley and Rissie, by having framed their hand and feetprint, as well as their hospital birth cards, knit caps and diaper covers. 6 – Understand loss is an emotional roller coaster. One day a parent will be fine while the next finds her in tears. No matter how many years after a loss, there will always be triggers that are hard to anticipate. Support

these parents through these emotional triggers, no matter how “trivial” they may seem. 7 – Don’t shy away. Approach the mom and ask her how she is doing. As one mom put it, “I just wanted people to say anything. So many people just avoided me. I would rather they say a cliche than nothing at all.” Another added: “I wish family and friends had known it was okay to talk to me. In my most lonely times, my friends and family avoided me because they didn’t know how to handle it.”

Understand loss is an emotional roller coaster. One day a parent will be fine while the next finds her in tears. No matter how many years after a loss, there will always be triggers that are hard to anticipate. 8 – Name the beloved ones. Use the baby's name that is in the hearts of its parents. 9 – It’s a different kind of loneliness. Try to understand the void left in their hearts. One of our friends describes it this way:

“I wish they realized the different kind of loneliness I have. I have no kids, so now after what I’ve been through, I dream of what my relationship with my daughters would have been like. I see mothers out and about with their children. They are good mothers because they remind me of what I don’t have and when I see those motherchildren relationships, I go right back to that delivery room when I got to hold my sleeping girls.” 10 – Words have an impact. Please don’t use cliches and say things like, “It happened for a reason” or “it’s for the best.” If you know someone with a loss story, just kindly let them share it, and consider sharing your own if you've experienced loss. As one mom put it: “Just listen…don’t say anything… Let me cry, let me be angry… and acknowledge that you don’t know the pain I'm feeling… and if you have been there, share your story. It helped me so much to hear from other women who had lost their babies and come through it. Some had biological kids. Some had adopted. And some never had kids at all, but they were in a place in their lives where they were able to be at peace with it. That’s what helped – knowing that in the end it, eventually, WILL be ok.” Grieving is a process that includes loss, sadness, and emptiness. Help parents remember and move at their pace. Your friend can use a listening ear, and someone to lean on during the hard times. They want to know they are not alone and that things do get better, day by day, hour by hour.

connexions

23


special feature

COLORADO FETAL CARE CENTER

44

Rare Expertise for the Rarest Conditions

24

connexions


Timothy M. Crombleholme, MD, was a young medical student when he read about the world’s first fetal surgery. And while it wasn’t successful, the idea of operating in utero, which had never before been done, became the spark that kindled his entire career. “It fired my imagination,” says Dr. Crombleholme. Thirty-five years later, Dr. Crombleholme has himself become a pioneer in this pioneering field. And as Surgeon-In-Chief at Children’s Hospital Colorado, he continues to expand its capability as the leader of the Colorado Fetal Care Center (CFCC) team.

“We don’t have to be satisfied with what’s been done in the past.” TIMOTHY M. CROMBLEHOLME, MD Surgeon-In-Chief

“We’re one of the few centers in the U.S. with the capacity to treat every fetal anomaly,” says Dr. Crombleholme. “We’re capable of treating the rarest and most complex of conditions, while achieving some of the best outcomes.”

With a 6-1 ratio of multidisciplinary experts per patient, 42 active studies, and research funding of more than $25 million, Dr. Crombleholme and the CFCC continue to break new ground, revolutionizing the care and treatment of both mother and child in high-risk pregnancies. “We don’t have to be satisfied,” says Dr. Crombleholme, “with what’s been done in the past.”

Along with the expertise to treat every fetal anomaly, the CFCC posts some of the best outcomes. Highlights include:

CONGENITAL DIAPHRAGMATIC HERNIA

93% SURVIVAL RATE – EXCLUDING CONGENITAL HEART DISEASE AND ECMO

87% SURVIVAL RATE WITH ASSOCIATED CONGENITAL HEART DISEASE

ONE OF FIVE APPROVED FETOSCOPIC ENDOLUMINAL TRACHEAL OCCLUSION (FETO) TRIAL SITES IN THE U.S.

MYELOMENINGOCELE (MMC)

45

FIRST

NEONATOLOGY

In partnership with Children’s Colorado’s Level 4 NICU, the fetal care team offers the experience and technology to treat virtually any medical condition affecting newborns, and the CFCC has evolved as a specialized delivery unit for some of the most medically complex fetal anomalies. Through the CFCC, Children’s Colorado is one of only three freestanding children’s hospitals in the nation with a dedicated labor and delivery unit, as well as fetal surgery suites and integrated, comprehensive neonatal care.

Colorado Fetal Care Center by the Numbers

TO OFFER PRENATAL MMC REPAIR FOR PATIENTS WITH A BMI BETWEEN 35 AND 40

FIRST TO USE 3D PRINTING TO PREFABRICATE MMC PATCHES IN ADVANCE OF SURGERY

100% FETAL INTRAOPERATIVE STABILITY IN MMC REPAIRS WITH SUPPLEMENTAL INTRAVENOUS ANESTHESIA

connexions

25


realizing the vision... near + far

T

The Fetal Health Foundation’s mission is to provide families with life-saving information, access to world class maternal fetal medical experts, connections to families who have faced similar journeys, counseling when grief strikes, funds for fetal research, and to raise awareness for fetal conditions and syndromes. While this mission has grown from a focus primarily on TTTS to literally hundreds across the fetal syndrome spectrum, we are also proud of our expanding reach. Over the last 12 years we have focused on helping families in the United States alone, and have done so successfully, but we knew we could do more. We knew there were patients around the world suffering from a lack of information and access to treatment options. We knew we could help through our mission and resources, so we decided to grow our sphere of influence by expanding our

26

connexions

by dalia el-prince

reach to international families and doctors. This past year, we were invited to attend the Colorado Fetal Care Center Fetology Conference, where we met fetal surgeons from around the United States, Canada and Belgium. We learned about the latest fetal therapy efforts, we shared our research grant opportunities, and our vision and goals for the next 3 years. Most importantly, we built a relationship with international doctors to help open the door in more easily expanding our reach to families; the ones for whom we work each day. Because of our participation at this conference, we were invited by the Fetal Medicine Foundation, led by Dr. Kypros Nicolaides, to attend the 15th World Congress, where sonographers, OBGyns, Fetal Surgeons, and a host of medical providers that care for a pregnant women were in

attendance from around the world. What an experience and what great exposure for the Fetal Health Foundation! At the World Congress, we learned from different people, different perspectives, and different parts of the world. Here are the top 3 learnings from attending the World Congress: *There is a need for a patient advocate foundation to reach out to patients around the world, connect them to fetal specialists, share the options of the latest medical interventions/ therapy, and provide comfort during a difficult diagnosis. All current foundations are focused on the medical field and growing skills, training, etc., but lack the focus on the patient. *There are a lot of people who want to get more training and build relationships with other international centers. Doctors are eager to learn and support their patients as best they can, and connect them to global


centers. Fetal Health has the contacts of the different doctors, sonographers, MFMs, fetal surgeons, etc., and we now share our research grant information globally to attract the best possible research for our funds. In addition, we will look at how the Fetal Health Foundation can bring together the different centers globally, and work more collaboratively to provide the best patient care. *We met several Doctors who we had supported their patients through fetal diagnosis, but their fetal surgeon was not aware of the Fetal Health Foundation and how we supported their patient. Connecting with several global fetal surgeons and sharing about the Fetal Health Foundation will ultimately help more patients through the process. By attending the conferences, we reaffirmed the need for the Fetal Health Foundation to expand its reach globally. As we built connections and showcased our website throughout 2016, we reached 75,000 people from 186 countries, supporting thousands of international and national families. In addition, we have added 7 international fetal care centers to our database of fetal center referrals, and awarded our 2016 Brianna Marie Research Grant to Dr. Jan Deprest in Belgium, ensuring we reach out to fetal research around the world to provide the best care/future for fetal syndromes. This year, we hope to continue growing these connections and improving our support processes to further reach and support those families both near and far.

The Fetal Health Foundation had a presence at two impactful conferences in 2016. By sharing about its resources, the Foundation is set to grow new partnerships in better supporting families around the globe.

With 15 years’ experience at Procter & Gamble, Dalia utilizes her expertise in global services, implementing and managing technology, overseeing call centers, and establishing and maintaining strong relationships to help provide strategic direction to the Fetal Health Foundation. Her dream is to help save as many babies as possible around the world.

connexions

27


photo courtesy of kristie serra photography

Adelaide & Genevieve, 9 TTTS Survivors 28

connexions


Ethan & Luke, 9 SIUGR Survivors

Pratley, 2

Cleft Lip/Palate Survivor connexions

29


creature comforts: fetal centers renovate for comfort and convenience

F

Fetal Care Centers are a new type of environment housing an emerging care delivery model in healthcare. This model focuses on the integration of comprehensive care in a “one-stop-shop” meant to provide the best possible outcomes for every mother, baby and family dealing with high risk pregnancies requiring complex medical diagnoses and treatment plans. The design approach for these new Fetal Care Centers is a result of the intersecting needs of three distinct groups – Mother, Fetus, and Care Team. Benefiting all three of these groups,

the Pavilion for Women, part of Texas Children's Hospital, designed by FKP out of Houston, Texas.

30

connexions


Fetal Care Centers bring together the spectrum of caregivers necessary to diagnose and treat complex medical issues involving both fetus and mother. These centers house care givers from a wide range of disciplines, including but not limited to: • Anesthesiology • Chaplaincy • Ethics • Fetal/Pediatric Cardiology • Fetal/Pediatric Radiology • Fetal/Pediatric Surgery • Genetics • Maternal Fetal Medicine • Neonatology • Nursing/Clinical Coordinator • Obstetrics & Gynecology • Research • Social Service Fetal Care Centers also benefit from various departments, giving direct access to both the caregivers and the mother to services such as Clinical Lab, Nutritional and Genetic Counseling, Neonatal Intensive Care, imaging modalities, surgical services and labor and delivery. These strategic partnerships exist to provide easy access to adult care for high risk conditions associated with the mother. The latter is becoming an important consideration in the development of these new centers.

different needs in terms of their care environment not only functionally, but aesthetically. For the mother, who has been diagnosed with a complex gestational issue there is a desire to be immersed in a calming and comfortable, “Spa-like” environment where she will receive care until the delivery, and in some cases, even after delivery. To ease the stress of visiting multiple locations to see different providers, the Fetal Care Center should be a full service facility for prenatal exams, genetic testing, labs, ultrasounds, consultations, and procedures. In this outpatient setting, exam rooms should be warm and comfortable with convenient access to restrooms and be appropriately sized to allow space for ultrasound equipment and technicians. Consultation rooms should be large enough to have comfortable conversations between the mother, her support network, and the care team when discussing diagnoses and care plans. These

rooms should have adequate teleconferencing technology to allow consultations with specialists located remotely. This is especially important since, depending on the diagnosis, there may only be a handful of physicians who specialize in the condition on site. For the unborn baby, aesthetics are of little importance. However, like the mother, having access to the latest medical technology means that there is a greater chance of correct diagnosis and successful treatments. Having infant stabilization rooms and fully integrated Operating Rooms that can video connect to physicians around the world can be critical. For the care team, there is a combination of needs that are consistent with both the mother and the baby. Being co-located with complementary disciplines allows the providers to truly function as a team and quickly collaborate for faster diagnosis and response to emergencies. Like mothers, the care team also

Having all these different providers, services and partnerships together requires an environment that is very different from today’s typical clinic. Furthermore, mother and baby have very connexions

31


responds more favorably in a warm, comfortable, and attractive environment; pleasant surroundings and access to natural light contribute to their well-being which in turn helps care teams provide better care to their patients by reducing their stress levels. Finally, access to the latest technology gives providers the tools to perform cutting edge care that is constantly breaking new ground in the treatment of diagnoses that in the past had little chance of a positive outcome. The internet, video conferencing and technology integration now give the care team the ability to consult with others around the world and have information at their fingertips. Access to the latest in robotics should be considered to assist surgeons in performing fetal surgeries. These Fetal Care Centers bring together the concept of high tech, cutting edge medicine with the high-touch environment of bringing new life into the world. This means improved outcomes for both the mother and the baby. At FKP we are excited to be a part of the growth of this new care model as we help to define the physical environment of fetal care. We are constantly looking for ways to integrate the latest technologies into designs that are consistent with the desired aesthetic of expectant mothers and the expected efficiency required by the multidisciplinary care team. We want to ensure that the environment of care is a seamless merger of high technology and efficient design, with highly personalized care. FKP is one of the nation's largest specialty practices, focused on the planning and design of modern healthcare, higher education and research environments. Each business unit – strategy, planning, architecture, interiors and equipment – is led by experienced professionals with deep backgrounds in facility design and operations.

designing for the patient's journey... In 2014, Gensler completed the renovation of the Children's Health FETAL Center in Dallas, Texas, which creates a safe, exclusive home for women with complicated pregnancies to receive consultations and counseling. The hospitable and warm atmosphere allows for individualized care throughout each patient’s journey while providing a soothing and relaxing environment. The design team blended lessons learned from successful hospitality environments with in-depth knowledge of health care protocols to create a space that is aesthetically pleasing and technologically advanced. Included in the space are a reception/waiting area, conference and consultation rooms, a tele-medicine center for distant consults that is also designed to expand and reconfigure for larger teleconferencing purposes, offices and support areas for staff and patients. Patients transition from the FETAL Center to tour the hospital’s neonatal facilities via an interior corridor filled with custom designed wayfinding graphics.capabilities. The FETAL Center is a Healthcare Design Remodel-Renovation Women’s Health Award Winner. -Healthcare Design

32

connexions


"

Technology was an extremely important program element for the space, as our physicians and staff in the FETAL Center embrace integrated technology for initiatives such as a robust telemedicine system. An additional project goal was to create a caring atmosphere of warmth, trust, and hope for our patients.

- Mark Robertson, Senior Design Mgr. & Planning Lead Children’s Health

"

Gensler is the largest design firm in the world. Our design experience includes a wide variety of industries and project types, giving us a more holistic approach to the spaces that impact the user experience. When health & wellness is the measure, people favor a personalized approach to care and prevention, expecting this to be addressed in new ways and settings. And, because the healthcare model is moving toward sustaining wellness at every stage in human life, we reflect this through designing a variety of spaces involving the patient experience. When we design for wellness, we tap our knowledge of work, hospitality, retail, and urban planning. We shape healthy experiences and outcomes – on campus and in communities. We work in health care and beyond it: every place where wellness happens.

connexions

33


photo courtesy of jane goodrich photography

get out and go!

tips for leaving home with babies in tow by julie mccaffrey

34

connexions


Whether you're driving away from the hospital with one or multiple newborn babies, it seems like the most amazing, yet scary thing that you will ever go through. That is until you try to leave the house for the first time with your babies. Getting the baby fed, changed and dressed and getting yourself ready, all while packing a bag that prepares for anything that might come up while you are out would make even the most social of butterflies want to stay home! With these few tips, each trip out can be a little bit easier!

pack right and pack often

Start with a slightly oversized diaper bag and just make sure it has a ton of pockets. If you have more than one baby, make sure you have any supplies you need to feed them for at least one feeding, an extra outfit for each of them, as well as all supplies to change their diapers, including a changing pad, diapers, plenty of wipes and diaper rash cream. Having two diapers for each baby for each hour you expect to be out seems like a lot, but that will make sure you are covered for any blow-outs. Make sure to include an extra swaddle blanket (they can be used for a cover-up if nursing, changing station, or just a clean place to put your baby down), and an extra pacifier in case you lose or misplace the one. Packing a wet bag or just a few storage bags is a must so that you have a place to keep wet or soiled clothes separated from your other necessities. You don’t want those mingling with your clean things, and

especially not with their bottles and other items they may put in their mouth. When you return home from your outing, always try to re-pack anything you used right away to ensure you aren’t missing anything on your next outing.

prep the house to get out the door

It may seem crazy, but time is everything when it comes to trying to get out the door and go. Have the car seat(s) by the door ready to load up the baby. Have the diaper bag packed and keep it close to the door, too. Have your stroller and baby carriers already loaded into your car. Get yourself and everything you need for your outing ready before loading the baby into their car seat. Once all the stuff is loaded, you want to be able to just pick up the car seat carrier(s) and load the baby into the car to be on your way. One missing, but very necessary item for your outing can increase the time it takes to get out the door exponentially, and no new parent looking for a muchneeded outing needs that!

door that the babies have clean diapers and full bellies. Morning is often the time that babies are the calmest, so getting out early rather than later can help avoid fussy babies while out and about. Newborn babies sleep a lot, so take advantage of those naps and get out of the house when you know they will be happy to sleep. If you have older babies, be sure to keep in mind their nap schedules, as some babies don’t do well when their routines are interrupted, even by just the tiniest bit.

make a list ahead of time

Trying to figure out how to fold out your stroller or attach the car seat to the stroller is not likely something you want to be doing just before trying to leave. Practice these kinds of things the evening before so that you are prepared when something doesn't work like it should. Frustration will get you nowhere in a hurry and you'll just end up wanting to stay home.

Your first trip out with a newborn will likely be to your first pediatrician’s appointment and there is a good chance when you get there, you will forget everything you wanted to ask (take it from hundreds of thousands of moms who have been there, done that!). With everything you have to remember to do and load in the car just to get there, is it any wonder? At home, keep a list with all of your questions and concerns and take it with you to the appointment. If you are headed to the grocery store or pharmacy, make a list ahead of time so you can get in and get what you need and don’t waste time wondering around the aisles. There are even great grocery apps to help you keep tabs of the things you need or are running low on via your smartphone. Try GroceryIQ for starters. Designed by coupons. com, it helps you manage your lists and save money while shopping, too.

timing is everything

dress the baby right

know your gear

No matter what time it is, make sure before you head out the

Layers are key to dressing babies so that you can easily remove

connexions

35


or add clothes to keep them comfortable. Look for clothes that give you easy access for diaper or outfit changes. Zippered outfits are also great for outings instead of having to deal with tons of snaps.

prepare for the worst

Always assume you are going to be out longer than you intend so that you have plenty packed in your diaper bag. Create a bag of extras that you keep in your car all the time so if you forget something in your diaper bag, you have an extra stash nearby. If you are using a stroller with air filled tires, keep a bike pump in your car. It may work easier for just one baby, but no one wants to carry twins that far in car seat carriers --not even in a pinch!

don’t forget yourself

Make sure for every outing, you have a change of clothes for yourself (for those big spit ups or blow-outs that somehow manage to cling to you, too). Pack snacks and a water bottle for yourself, too. This is especially true if you are breastfeeding, as you will need to stay hydrated and nourished to continue healthy milk production. If you’re not carrying a separate bag, make a place in the diaper bag so you have quick access to all of your

important things --- phone, keys, money, and ID.

be patient

Remember that you are now mom to a beautiful, brand new baby (or two!), and for the first little while, nearly everyone you encounter will be interested in meeting your new bundle. This is especially true if you have multiples, as there is just a very real and natural curiosity about them. You'll be asked a number of questions (some maybe even a little awkward for the twin moms), but know that you can easily handle the situation with grace and walk away without engaging in lengthy conversation. Also, be wary of those strangers who want to touch or hold your baby. While they may be well-meaning and have good intentions, the germs and possible resulting sickness are the last things you want to worry about on your outings.

relax and enjoy

Most importantly, try to relax and enjoy the outing. Your baby will likely cry while you are out and you will forget at least one thing you need and wish you had. Don’t be afraid to ask for help or to take along your partner or a friend on your first few outings. Before you know it, you’ll have it all down pat and will be out in a flash!

Julie McCaffrey is a mommy to 3 kids, including one set of twins. Julie owns BabyNav Baby Planners where she offers personalized consultation to new and expecting parents. She is a modern baby gear expert and loves to help moms and dads navigate everything from baby gear to preparing for multiples to getting back to work and getting the whole family on a routine. Follow her on Facebook, Twitter and Instagram, or check her out at www.babynavbabyplanners.com.

36

connexions

baby showers contd. and is just another part of such a wonderful milestone during the pregnancy. Take them up on the generous offer and try to forget about your high risk pregnancy, if only for those fleeting moments in that day. Considering you either already are or will soon likely be on bedrest due to your high risk situation, take advantage of some of that time when you start to go a little stir crazy. Start updating that baby book sitting in your nursery and write heartfelt thank you notes to those who attended and gave. Despite the current situation or outcome of your pregnancy, at the end of the day, it is still most important to realize and recognize how very blessed you are. As I was preparing for this article, my TTTS survivors asked what I was writing about. Being that they are now an unbelievable 13 years old and have heard story after story of the challenges and obstacles many families face when diagnosed with a fetal syndrome, I asked them for their thoughts on the subject. They both, individually and resoundingly said 'yes, every mom should still have a baby shower. Why wouldn’t they?' So there you have it... out of the mouth of babes, as they say.


37

connexions


taking care of you..

6

F

areas to not neglect

Finding out that you are pregnant with multiples can often start a cascade of worries about how life is changing and what will change for you and your partner. It is so easy to quickly get overwhelmed at the idea of raising multiples and fear losing yourself in the process. I offer some steps you can take after becoming a parent of multiples that will help you be happy, healthy, and hopefully not too insane. As a first step, for both during the pregnancy and in that haze that is the first six months or so postpartum, a support system that includes other parents of multiples is crucial. This support can be either in person or online. Support from others is going to be the needed foundation for

38

connexions

this parenting journey and also the foundation to help you, the parent, remember what you need. The next logical step after receiving advice is to set expectations for yourself. These expectations can start during pregnancy, but continue through every stage of parenting. In order to take care of yourself, these expectations have to be flexible and you need to be able to change. If you stay rigid in your thinking, this inflexibility is a set up for failures that can be damaging to your self-esteem. Don’t set strict timelines for events such as your kids giving up pacifiers, sleeping through the night, or toilet training. Putting that pressure on yourself or

by jessica therivel insisting on deadlines for these major parenting challenges can cause anxiety and a sense of failure if the goal is not met. Be ready and willing to change those expectations based on the results your kids are giving you. Don’t get frustrated if progress is slower than expected. Even if a particular milestone or task is taking longer than you have expected, if your child is still within the pediatrician’s parameters, try to let go of anxiety. Making time for you, but also your parenting partner is often a low priority. It should be one of the highest priorities. It is so easy to feel like you are drowning in a to-do list when you are parenting multiples and the


easiest thing to do at night, once they are in bed, is to flop on the couch, throw on the television, or start mindlessly clicking through your phone. Before my twins were born, my husband and I figured out who we trusted to watch them even at an early age and made plans to start resuming a twice a week date night schedule when they were a month old. In the early days, we did not go far or stay out for more than an hour or two, but there was still something liberating about spending that one-on-one time together. We have maintained that regular babysitting schedule and my girls just turned nine. The long-term benefit is that they are very comfortable with us going out and also see that the love and connection between their dad and me is a priority. If finances are a concern and will make getting a sitter difficult, it still works to commit to at-home date nights. This to me means that phones are plugged in and left in another room. Instead of just flipping through shows, pick a movie or a series to binge watch, grab some popcorn, dim the lights, and make it more of an event. Don’t multitask while watching because the focus should be on each other. For any single parents, this type of self-care is as important for you if not more so, and the same guidelines can work to help you feel like you are taking care of the side of you that needs some fun and a break. Personal enrichment is an area of self-care that can help you achieve a feeling of accomplishment. Personal enrichment to me means finding something that is fulfilling or satisfying for you to do that is not directly related to your

children. This may be fitness related like a sport or a particular favorite exercise class, or it could be a long-forgotten hobby like painting, photography, or reading and joining a book club. You should explore options that require at least 30 minutes of your time each week. If you can find things to work in daily like an exercise class, that will prove even better for you. A few years ago, I started back horseback riding lessons which have been so much fun and something that is 100% just for me. Feel guilty about spending money on yourself or it’s just not in the budget? Activities for personal enrichment don’t have to cost anything at all. Get creative and try having a schedule for going for walks on certain days or certain distances. You can set a goal for reading a certain amount of new books each year. Any of these activities just require a real commitment on your part to be consistent in your participation. Another area of self-care that needs your time and attention as the parent of multiples is in the area of cognition. Cognition as it relates to self-care refers to the thoughts, senses, and experiences that you as a parent are having about yourself. As parents, we need to try to actively manage negative thoughts that we are having about ourselves or our capabilities as parents. This means getting rid of negative self-talk where you get down on yourself for decisions or choices you have made. We have all felt bad at times for raising our voices, mishandling a tantrum, etc., but we need to turn that around and remember the times where we have been positive parents and give ourselves second chances. To help in improving positive self-cognitions, parents will need

to try to set attainable goals. A long to-do list can feel like an impossible mountain to climb and because it seems insurmountable, you don’t even try to do any of it. What I find works instead is to pick one or two things to get done in a short amount of time. Be kind to yourself and try to stay away from expectations of perfectionism and unrealistic goals. Too many of these and you will be headed for parental burnout. Finally, the last important task for good self-care is to enjoy a shower or bath. Yes, that’s right, make sure to take a shower. When the babies are little, it is so easy to say you didn’t have time to shower. This can end up having a major effect on your entire outlook for the day. When I was on bedrest for 9 weeks, with 4 weeks of that in the hospital, I still made an effort to get showered and dressed because I felt better to not be in pajamas all day. Don’t get me wrong, I am not suggesting that you should be taking an hour to get ready each day. The reality is a shower can take less than 10 minutes and a child can cry for 10 minutes without it being harmful. Showering is a basic, but very important step in feeling like you are still a functioning and productive adult. I used to park my twins in their bouncers right in front of my shower door so they could see me and I could see them. This ensured we were all okay. What all of these tips boil down to is finding out what you need to do to take care of yourself. With so many options for self-care, try to focus on one or two and leave the excuses for another day.

connexions

39


Caelie & Ella, 11 TTTS Survivors

Henry, 3

Fetal Hydrops Survivor 40

connexions

Owen, 8

TTTS Survivor


Ben & Camden, 6 mos. IUGR Survivors

Cambree & Carly, 7. TTTS Survivors

connexions

41


special feature

Expert Care from the

Cincinnati Fetal Center When a fetal abnormality has been diagnosed, pregnancy can quickly turn from feelings of joy and excitement to fear and worry. At the Cincinnati Fetal Center, our team of experts is dedicated to exploring the unique challenges and opportunities facing each patient and unborn baby. As we do so, we often are able to provide innovative treatment options that offer real hope.

specialize in treating complex and rare fetal conditions. As experts in maternal-fetal medicine, neonatology and fetal surgery, they share a passion for providing exceptional, comprehensive care. Our extensive experience, coupled with our clinical and basic science research to improve fetal care, enables us to provide the most sophisticated, effective therapies available.

Our team is led by physicians from Cincinnati Children’s, Good Samaritan Hospital and University of Cincinnati Medical Center, who 42 connexions

Care for the Full Spectrum of Fetal Conditions The Cincinnati Fetal Center is one of only a few comprehensive fetal care centers in the world.

We use advanced technologies and cutting-edge therapies to treat a variety of medically complex fetal conditions, including: • Amniotic band syndrome • Bladder outlet obstruction (BOO) • Chorioangiomas/placental tumors • Congenital cardiac disorders* • Congenital pulmonary airway malformation/Congenital cystic adenomatoid malformation (CPAM/CCAM) • Congenital diaphragmatic hernia (CDH) • Fetal teratomas and other tumors • Myelomeningocele (MMC)/ spina bifida • Twin-reversed arterial perfusion (TRAP) sequence


• Twin-twin transfusion syndrome (TTTS) • Complex multiple gestations * in conjunction with the Fetal Heart Program at Cincinnati Children’s We offer sophisticated diagnostic testing and comprehensive treatment options. Our center’s distinctive three-hospital collaboration allows us to draw on extensive resources as we develop treatment plans tailored to each of our individual patients. Triplets’ Parents Find Hope Matt and Sara Manucy learned of Sara’s diagnosis of twin-twin transfusion syndrome 25 weeks into her pregnancy. Pregnant with triplets, Sara and her husband Matt were surprised by how quickly the condition came on, and how severe a case it was. Sara’s doctor immediately referred her to the Cincinnati Fetal Center for evaluation. Two days later, the couple flew from their home in North Carolina to Ohio. Without treatment, TTTS is often fatal. But the Manucys found options at the Cincinnati Fetal Center. Their care team determined the possible treatments, one of which was selective fetoscopic laser photocoagulation (SFLP). “They walked us through all of the scenarios, good and bad,” says Sara. “They made sure we understood every picture, every procedure, and the risks involved. They were straightforward but gentle with

their explanations.” Matt and Sara opted to have SFLP the next day. Five days post-surgery, Sara returned for follow-up tests. “The boys showed no negative signs. It was essentially a healthy pregnancy at that point,” Sara says. The surgery was successful. At 33 weeks, Sara gave birth to three little boys. “They were perfectly healthy, normal newborns,” Sara says in awe. “We were put in what we believe was the best care possible and that gave us hope. We felt we made the best decision for our family by going to Cincinnati. We will eternally be grateful.” Our Team The Cincinnati Fetal Center is a multidisciplinary program with a core team of faculty and staff who provide care that is both highly specialized and compassionate, with each of our patient’s needs at the forefront at all times. Our team is made up of: • Maternal fetal medicine physicians • Pediatric surgeons • Neonatologists • Clinical director • Advanced practice nurses • Nurse coordinators specializing in fetal care • Labor and delivery nurses • Dedicated social worker • Genetic counselors • Customer service representatives • Insurance specialist • Program manager • Business director In addition, we partner

with more than a dozen specialty divisions to provide individualized counseling and care management planning for prenatal and postnatal care. Among the resources the Cincinnati Fetal Center offers are Child Life, Pastoral Care, a Family Resource Center, and a Pediatric Palliative and Comfort Care Team for families who need this support. Comprehensive Evaluation, Diagnosis and Treatment When you are referred to our center as a patient, one of our nurse coordinators will speak with you by phone to gather your background information. Using this information, along with any referral notes and test results, the team will determine which of our specialists are best suited to care for your needs. These physicians will work with others at the center to provide: • Diagnostic testing • Fetal assessment • Prenatal counseling • A comprehensive management plan • Fetal interventions and fetal surgery, if necessary • Support services • Postnatal care • Long-term follow up We provide care in an atmosphere of compassion, knowing that our patients and families are often dealing with difficult decisions and fears about the future. Collaboration is at the heart of our approach. Patients, family members and referring physicians are all part of our team, and we encourage referring connexions

43


physicians to contribute their own insights to the patient’s care. Innovative Treatment Options Our physicians are passionate about finding therapies to improve surgical outcomes and enhance quality of life for patients. Innovation is a hallmark of our approach to care. For example, the Cincinnati Fetal Center is one of only a few institutions in the US to offer surgical interventions for triplet pregnancies affected by TTTS, and for patients with TTTS who present with an anterior placenta, hydrops and short cervix. We offer all fetal procedures, including:

Luke, Oliver, and Will Manucy, age 5. Luke and Oliver are TTTS survivors.

The Cincinnati Fetal Center is one of only a few comprehensive fetal care centers in the world. 44

connexions

• Ex-utero intrapartum treatment procedures – EXIT-to-airway – EXIT-to-resection – EXIT-to-extracorporeal membrane oxygenation (ECMO) • Shunting o Vesicoamniotic fetal shunting o Thoracentesis and thoracoamniotic shunting • Selective fetoscopic laser procedure • Minimally invasive fetoscopic surgery o FETO—Fetoscopic endoluminal tracheal occlusion for CDH o Fetoscopic MMC repair • Open MMC Repair • Radiofrequency ablation • Open fetal surgery for rare and life-threatening conditions • Fetoscopic devascularization


of chorioangiomas/placental tumors • Amnioport/Serial amnioinfusions • Amniocentesis, PUBS, and amnioreduction • Comprehensive care for highrisk genitourinary conditions including, but not limited to BOO and bilateral renal agenesis Our team also offers nonsurgical therapeutic options. Among them: • Intrauterine transfusion • Steroid therapy • Expectant management • High-risk pregnancy management • Genetic and prenatal counseling • Management of short cervix

expect more. learn a little MORE... Cincinnati Fetal Center Leadership Foong-Yen Lim, MD Surgical Director

Jose Peiro, MD, MBA Endoscopic Fetal Surgery Director William Polzin, MD Maternal-Fetal Medicine Co-Director Arthur Evans, MD Maternal-Fetal Medicine Co-Director

Careful prenatal planning allows us to anticipate potential complications that may occur following delivery and establish a strategy for managing those problems. We work closely with specialists at Cincinnati Children’s, who have extensive experience in caring for critically ill newborns and providing long-term follow-up care to help them reach their full potential.

Paul Kingma, MD, PhD Neonatal Director

The goals of the Cincinnati Fetal Center are to educate our patients and work collaboratively to offer the best possible outcomes for complicated fetal diagnoses. We are proud to offer our patients expertise and care from such a strong group of caregivers and support staff who are fully committed to those goals.

****************

Kim Burton, MSN, MBA, RNC Clinical Director Mounira Habli, MD Maternal-Fetal Medicine Specialist Sammy Tabbah, MD Maternal-Fetal Medicine Specialist

1-888-338-2559 info@fetalcarecenter.org www.fetalcarecenter.org For emergency/inpatient transfers and outpatient referrals, non-urgent referrals and consultations with fetal care specialists, call 1-888-FETAL59. connexions

45


the great candy run:

a #1 family running event in colorado by michelle somers

46

connexions


CANDY! Just the word elicits a smile. Whether you are 5 or 95, surely you have a favorite and sweet memories of it, too.

Combine those memories and all that excitement into a familycentered event and you've got The Great Candy Run in support of the Fetal Health Foundation. It has become the Foundation’s annual signature fundraising and awareness event. Skip forward 13 years, and the Denver based event not only changed names, but has grown beyond its backyard. Through the years, the event and its efforts has made appearances in cities on each coast including Charlotte, Jacksonville, Atlantic Beach, Los Angeles and Seattle. Some of these cities hosted the event for several years in a row, while others were single engagements. All of this movement has provided opportunities to spread hope and awareness by reaching people across the country. However, the growth of the anchor event in Denver has been something special. The most recent event in November 2016 hosted more than 7,500 participants, volunteers and spectators. It received media

attention from several television, radio and print outlets across the metro area enabling the event’s reach to grow to nearly a million people. The Denver Great Candy Run not only attracts runners of all ages, but also families and thousands of youth runners. Families gather to create memories amidst all of the fun activities at the event in addition to the 5K itself. Typically, there are several exciting activities that take place pre-event. This may include a dance team performance, boy scouts presenting the colors, amazing vocalists belting out the national anthem, but always includes a Kids Fun Run with a few of its own perks. The smallest kids get to take part in their own run. They all get to run wearing Bib #1 and are awarded a custom kid’s medal as they cross their own special finish line. What an amazing spectacle to see these kids cross the finish line with their big smiles and excitement! All of this early morning activity leads up to the main event, the 5K run/walk. The front runners are often led out on to the course by a special vehicle, ambassador family or even a group of do-good motorcyclists, “Ridin’ for A Reason.” Along the course, participants may be treated to on-course music, activities and even a prize fairy delivering unique prizes donated by local merchants. In the end, runners and walkers alike are treated to an amazing finish line, with large crowds eager to cheer on every last person, and

volunteers ready to recognize the feat with a sweet medal and goody bag. The finish line isn’t the end of the experience; it might be just the beginning. An entire family festival and vendor area await. These areas are filled with games, refreshments and yes, candy! The allure of candy has made the event that much more appealing to the general public and has helped spread the message of hope to people who may not have been reached otherwise. Often, people don’t realize how their very own friends or family members have been impacted by a fetal syndrome. This is just one vehicle that opens the door for affected families to be able to talk about their experience, to honor their angels, and celebrate their survivors. It has been an honor to meet families that were touched by a fetal syndrome and supported by the Foundation. The proceeds from these events are vital to funding the core operations of the Foundation and to funding programs and much-needed research grants throughout the year. With two events planned for this year, sign up now at thegreatcandyrun.com. For those that live outside of the areas where The Great Candy Run takes place, there is now a virtual run option that offers you the opportunity to join the fun and receive a race bib, medal and t-shirt. You can post pictures of your own sweet run on social media in sharing the sweetest finish ever!

Michelle is Co-Founder of the Fetal Health Foundation with her husband, Lonnie. Her inspiration for supporting families and research lies within her identical twin girls who are TTTS survivors. She also works with her husband in their event timing and consulting business and loves to run in her spare time.

connexions

47


questions you may ask during a

high risk pregnancy

by alyssa keel

48

connexions


F

Finding out you are having a baby can be both exciting and scary, without the added stress or worry about having a high risk pregnancy. The best thing any expectant parent can do is to inform themselves of what is exactly going on to ease some of the anxiety associated with being high risk.

It is also important to always remember the source of information received, and to seek answers from professionals who can provide you with non-judgmental and unbiased answers that make the most sense for you and your babies. Below are some of the questions that you should ask should something place you within the high risk pregnancy category.

what makes this a high risk pregnancy?

Knowing exactly why you are considered a high risk pregnancy is important. Is it your age? Is it due to the results of a scan or test? Is it the type of twins you are having? While fraternal twins are generally not as high risk as identical, mono mono, or conjoined twins, knowing if it is the number of babies you are carrying or how you are carrying them, for example monochorionic/ diamniotic, that makes you high risk is important to know.

is there a health concern with you or the baby that is putting you at high risk? If you have diabetes, certain

genetic markers, or other health concerns, you may be considered high risk due to the chance of premature birth or potential issues with the baby(ies). Once you know exactly why you are considered high risk, there are follow-up questions that you can ask directly related and specific to your experience.

did I do anything to cause this?

If it comes down to a fetal syndrome diagnosis, that is usually always a resounding 'no'. There is nothing you did to bring on an anomaly like TTTS, fetal hydrops, IUGR, Hypoplastic Left Heart Syndrome, or any of the other multitudes of syndromes that may affect your baby while in the womb. Just let the experts do their jobs in treating the problem and helping you get the care you and your baby need.

what is the plan for moving forward?

After the reasoning behind your high risk status has been identified and described, you can find out what your plan for possible treatment and care will be moving forward. Do you need to come in for additional appointments, ultrasounds, or blood work? Is there anything that you need to do at home to ensure the wellbeing of your

babies? Will you continue to see your doctor, or will you need to see specialists as well? Alternatively, if you are with a midwife, can you continue seeing them or do they recommend that you transfer to a doctor’s care? Is bedrest or inpatient care possible or recommended? Knowing these key things will allow you to plan for missed work or child care if there are other children at home.

what will the birth look like?

You may have previously discussed or even created a birth plan, but is it possible that this may change? Can you attempt a vaginal birth or must the baby be delivered via c-section? Is home birth possible or do you need to be in a hospital or clinic? If you are planning or hoping to breastfeed, will you be able to do that or will your baby be whisked away for treatment and attention directly after delivery? Can your partner participate in any way during this process? Will your partner or support person be able to stay in the delivery room with you or will they have to wait outside?

will my baby be born prematurely?

When considered a high risk pregnancy, the risk is often higher for a premature birth. However, many high risk pregnancies are able to carry full-term with a little extra monitoring. However, the risk of premature birth is still there, and having an honest conversation with your medical team regarding the likelihood of a premature delivery and what

connexions

49


that may mean for your baby is important to quell any anxiety you may be feeling.

will my baby spend time in the nicu?

Not all babies who are born prematurely will spend time in the Neonatal Intensive Care Unit (NICU). Understanding that weight, gestational age, health, and feeding may send your baby to the NICU, but they may not need to go at all if your clinic has a pediatric unit or lactation consultants who can help you to ensure proper oral feeding is taking place. If there is a good chance that you may find yourself on the NICU journey, taking a tour of the NICU and seeing preemies and the equipment that is being used should be requested. A conversation with a neonatologist or pediatrician working in the NICU may help to answer specific questions related to your baby's care.

will my babies come home at the same time?

If you're carrying twins and only one of your babies faces complications during pregnancy or after birth, your babies may not come home at the same time from the hospital or the NICU. This is important to prepare for mentally, but also to know for planning purposes in order to ensure that if one parent will be staying with the

admitted baby, the other, or a support person, can care for their sibling at the same time while at home. You will not be allowed to bring the discharged baby back and forth to the NICU, and considering germs and exposure, you likely would not want to risk that anyway. Knowing the visiting hours, what is expected of you when you visit, as well as guidelines about bringing other children into the hospital, clinic, or NICU are important to note, too.

what support can I receive?

It may seem that the only thing you can think about at the time is the well-being of your baby, but it is equally important to take care of yourself. Adequate rest and proper nutrition, as well as light to moderate exercise if allowed by your doctor, will be crucial to helping you stay in the best physical and mental shape during this trying time. Is there any support that can be recommended to you while you come to terms with what is happening? Social networks such as Facebook offer many online support groups with parents who have been in similar shoes, but there may also be more intensive care or support that your medical team can arrange, such as counseling or in-person support groups. Meeting someone local and face-to-face on a regular basis who may have travelled your

same journey may be just what you need and look forward to throughout the remainder of the pregnancy. If you are unable to work due to your pregnancy, is there financial support you can receive to alleviate some of the burden associated with missed wages? Check with your employer about short-term disability or other options to help your family during this transitional time. When it comes to necessary treatment for a possible fetal syndrome diagnosis, it may set your mind at ease to talk with your insurance company. They will help you better understand your benefits and how they will help with regard to any surgeries or treatment options that go beyond your typical care. It might also be a good time to talk about your hospital stay, as you may be required to be admitted earlier than normal or stay longer than usual. The most important thing to remember as you ask questions and seek information is that you should never be afraid to ask and learn more. If something is unclear or there is too much medical jargon being used, ask for things to be explained in other more simple ways so that you feel prepared, knowledgeable, and confident. This is your baby, and ultimately, your new job is to be the best advocate for yourself, them and your growing family. You will be the one to care for them during the hardest and the best of days.

Living in Toronto, Alyssa is a single mum to a rambunctious four-year-old boy and amazing twoyear-old identical twin girls, one of whom has Cerebral Palsy. During her high risk mono mono twin pregnancy, Alyssa began blogging, an extension of her love of writing.

50

connexions


Brooke & Brianna, 11. TTTS Survivors

Isabell, Carly & Julia, 14 TTTS Survivors

connexions

51


Savannah & Morgan, 10 TTTS Survivors

Ashley & Aspen, 13 TTTS Survivors

52

connexions


i have hope for...

NEW BEGGINNINGS

A BRIGHTER TOMORROW

LOSS

hope

RESEARCH

awareness

A FIGHTING

CHANCE

ALWAYS REMEMBERING

healthy babies. connexions

53


get help while on bedrest... and how to ask!

by susan rassette

54

connexions


w

ith a high risk pregnancy, there are many different reasons that you can end up on bedrest. You may be confined to home, but even hospital bedrest is a possibility, depending on the issue. While it seems a blessing, bedrest is one of the hardest things you might ever go through. If you are used to being independent, suddenly depending on others for everything from keeping your house clean to even washing your hair can cause even more stress in an already stressful pregnancy situation. Though it may be hard to do and you’re unsure how people will respond, ask for help. People really do want to help --- really, they do! I know it is really hard to ask for the help, but do it. It will help ease your stress and it will get you used to asking for help, a skill that will benefit you greatly once your babies arrive. When you end up on bedrest all the phone calls, texts, and emails can be overwhelming. Come up with a plan to organize everyone who offers help. Are you good with spreadsheets? Make one that lists everything you need help with, and start assigning volunteers. Spreadsheets not your thing? Make a list or ask someone else to be in charge of getting your list down for you. Start a blog or utilize the CarePage your doctor or hospital may have available. It’s easy to keep people updated on you and the baby's status, ask for help, and keep track of who may be helping you out, when and even how through

this invaluable resource. Still not sure how to ask and what you may need help with? Here are 20 easy ways to be helped while on bed rest:

1. Have other kids at home? Ask family and friends to organize childcare to help you out. Ask someone organized

(if that’s not you) to keep the schedule for you. Make sure any carpool needs are covered, too. Also, if you end up on bedrest in the hospital, don’t forget to ask people to bring your kids to see you. You’ll want them as involved as they can be so that they feel included, which will especially help with the transition of the baby's arrival.

make [a list with] everything you need help with , and start assigning volunteers. 2. If anyone offers to bring you food , take them up on it. Even if no

one offers, ask for food. I was on hospital bedrest with my first two (and only) children, so the number one favorite thing people did for me was bring me food because the hospital food was awful. Even on home bedrest, it is wonderful to have a schedule of meals brought to you that can easily be warmed

and served. You’ll be in no condition to be on your feet slaving away at a stove or in the kitchen preparing meals for your family. The added bonus is that some of the meals can be frozen for easy dinners after the babies arrive. Again, you’ll likely be tired, healing and a little overwhelmed and the last thing you’ll want to think about is preparing dinner.

3. Have someone you know who actually likes to clean? Ask them to help you keep the house clean while you are on bedrest. I know I have several relatives who fit that bill, so I’m sure you do, too. Even just a simple cleaning of the dishes, picking up toys, or vaccuuming goes a long way to keep you off of your feet and the stress of a messy house at bay.

4. If you have pets, ask an animal lover you know to help you by walking your dog every day, or cuddling your cat. This is an easy task for a

neighborhood kid who would like to earn a couple dollars each week. Chances are your pets are feeling anxious not knowing why you’re not your normal self and this attention will help ease their minds.

5. Ask someone to pick up baby books or a journal for you. This is a

great time to do a little writing, so be sure to document your bedrest journey. It will help pass the time, help you remember all you went through to get your baby to arrive healthy, and it can be very cathartic throughout.

6. Ask someone to bring you comfort items. A big connexions

55


U-shaped pillow will do wonders to keep you from having sore hips while you flip from one side to the other. Lip gloss, hand lotions, hair bands, face cleaning wipes, and other things that will keep you comfortable will make you feel so much better. Nail polish to do your nails and even toes (if you can still reach them!) is another item people can bring you to help keep your mind from going crazy and make you feel pretty.

7. Ask for a lap desk . I

was lucky to work from home when I was on bedrest, so I had a hospital style table desk that I could use to hold my laptop while I worked. This would be great even if you are not working, but simply want somewhere on which to place your stuff and eat your meals.

8. Are you stuck upstairs on bedrest? Ask someone to gift you your baby monitor early. If you’re

tired of feeling isolated upstairs while the rest of your family is conducting their lives downstairs, get a baby monitor or some two-way radios so you can communicate with those on different floors without having to yell down to them.

9. Ask for busy work --- reading materials are great for this! If you

don’t want to go into debt with Amazon, use your library’s website to put books on hold and then ask a friend to go pick them up for you. All you have to do is give them your library card. Have a tablet? You can also

download digital books from your library or look into fun apps and games to keep your mind busy while the hours tic by.

10. Get a Netflix subscription and enjoy your tube time . Binge

watch all the shows you always wanted to watch. Trust me, after the baby arrives, you will not have the time to do it and will wish for even one of these afternoons back.

11. Ask someone to bring you a basket of snacks to keep handy at your bedside . See if you

can borrow a small refrigerator to keep food and drinks cold and handy. Chances are that many days you’ll be home alone without anyone to run back and forth to the kitchen for you.

12. Do your shopping in preparation for baby's arrival online . Since you’re

the only one home, ask a friend or neighbor if it is okay to have things delivered to their house. Maybe even ask if they could help to get your nursery set up, painted, furniture put together, etc. Most people would love helping make way for baby, and especially when you’re not able to do it yourself.

13. Ask for help with laundry. If they can wash

and dry everything and bring you the basket to fold, it’s help!

14. Ask someone to pick up things to pass the time . The days are long on

bedrest and it’s helpful to have a variety of things to do to

pass the time. Request coloring books, puzzles, etc.

15. Order some thank you notes online and fill them out. Ask a friend to pick up some stamps for you and mail them out. It’s a lot harder to get those out once the babies arrive.

16. Start researching childcare options. Ask

friends who use childcare for their recommendations.

17. Ask for people to visit you. Don’t be shy about

giving specific time ranges you’d like visitors. It’s really hard to be on bedrest so ask those friends and family who you know will be a willing sounding board to listen to all your frustrations.

18. Ask to borrow a laptop or tablet if you do not have one . Get your

registry and planning done online this way. Even if it just for a few days, you can accomplish a lot in a little time.

19. Learn a new craft.

Crochet, knitting, etc. Ask a friend if you can borrow some of their supplies to get started.

20. Ask someone to help dad out. Maybe he needs a

break. A game of golf, a night out with friends, someone to mow the lawn for him. Don’t forget about him in this situation; it’s stressful on him, too. A little help can go a long way. Don’t be afraid to ask. People want to help and once you become a mom, you’ll be seasoned at asking for help!

Susan Rassette is a single mom to ten year old fraternal twin girls. She lives in Indiana. She loves freelance writing, mainly about her experiences as a twin mom. Her hobbies include baking, fitness, bike riding, and reading.

56

connexions


Zachary, 12 TTTS Survivor

Clara, 11mos.

Spina Bifida Survivor

Mac & Cooper

Mac & Cooper, 13

TTTS Survivors (Angel Bennett) connexions

57


how to capture

memorable birth photography by jane goodrich

58

connexions


O

ne of the most amazing, powerful, and memorable images you can get is of your fresh skinned baby just after birth. If you are the mother, being behind the camera might not be on the top of your priority list, in which case your partner or a friend can sub in to offer their services. Here are my top tips for getting great photos of your newborn baby.

Preparation is Key

Whether you are the go-to person or have nominated someone, make sure that the gear is packed and ready. Spare batteries and memory cards are vital, as well as at least one lens that allows you to get close for portraits. Also your phone’s camera can work well, too, but make sure that you have enough memory on the phone to take photos! Planning a birth and the photography around it is complex enough; when an unpredictable delivery is involved, planning can sometimes go out the window. Talk to your doctor about options in regards to c-section, whether you’ll be permitted to have a camera in the room (or at the least, a camera phone). Keep in mind that one person is typically allowed in the operating room, so a significant other or grandparent might be called on to take charge. Chances are that when your baby is born, they’ll spend some time in the NICU --- where only immediate family is typically

allowed. Don’t be afraid of taking photos; while it might be a bit of a stressful time at the moment, these are moments you’ll want to look back on later. Capture all the little details along the way.

Capture the Moments

Of course, you’ll want baby photos, but there are other moments to capture, as well. Take photos of the card on the bassinet. Photograph visitors, cards, gifts, baby fingers and feet, medical bracelets, stays in the NICU etc., even portraits of the doctors and nurses who were involved. Any milestones that occur in the hospital should be captured as well, like first feedings and diaper changes, first baths, weigh-ins, getting ready to go home, etc. Do ask visitors or a nurse to take photos of the whole family!

Settings

Luckily, a hospital environment is generally well lit, which bodes well for photos. A good portrait lens will come in handy, along with a large aperture will help you create soft portraits with your baby as the focal point. Use the window light and white hospital to your advantage!

Print!

When all is said and done, print your photos. Whether you frame, tape to the fridge, or stick in a baby book, your photos are a lasting memory of those first precious few days of your baby's life and the journey you made together to get them here.

A New-York based newborn and children’s photographer with an artful eye and a modern edge, Jane’s talent lies in her ability to capture a moment in time. Her work has been featured in Parents Magazine, Westchester Family, Westchester Baby and Multiplicity Magazine.

connexions

59


special delivery: from spina bifida to living miracle Sometimes, when we seek to learn one thing, we end up learning something far more important.

When Coon Rapids, Minnesota residents Nicole Carlin and her husband, Robert, were expecting their second child in 2015, they decided to have a nuchal translucency (NT) scan detecting any genetic problems. This procedure, which uses an abdominal ultrasound, measures the nuchal fold thickness, an area of tissue at the back of an unborn baby's neck. Measuring this thickness helps assess the risk of Down syndrome and other genetic abnormalities in the baby. “I only did this scan to get a free ultrasound; we never thought it would pull anything up,” Carlin admits. “We did the first (trimester) part and everything looked great. When we had blood drawn for the second trimester part, we got a phone call from the

60

connexions

doctor. I missed the call, but knew something had to be up since she just emailed us with the first part.” After playing phone tag with the doctor, the Carlins eventually learned that the second trimester results showed there was a 1-in-33 chance their baby had a neural tube defect. NTDs are a group of conditions in which an opening in the spinal cord or brain remains from some point early in human development. “Our idea was that on the day before Christmas we’d get a fun 3D ultrasound and find out the sex of the baby,” Carlin said. “Never did I consider that this ultrasound would be more than just a gender reveal.” The planned ultrasound disclosed the great news that their baby was a girl, but it also


showed that their unborn daughter was the 1-in-33. She had spina bifida, an open pocket in her back that results when the bones of the spine (vertebrae) don't form properly around part of the baby's spinal cord. “One thing I can be really thankful for is that when the doctor shared this scary news with us, at the same time he reassured us that the situation wasn’t as bad as we might think,” Carlin acknowledged. “He told us there is surgery they can do before birth and that we were great candidates for it. Also, they can do surgery after birth. Either way our baby would be okay.” After hearing the spina bifida diagnosis, the Carlins agreed that they wanted to do anything and everything to help their child. “I have always been a person who needs all the facts in order to make a decision,” Carlin says, “so I asked the social worker who came in with the doctor if there was someone we could talk to. We met with Dr. (Joseph) Lillegard, who was starting to perform fetal surgeries

here at Children's Minnesota in Minneapolis.” After Dr. Lillegard answered their questions about fetal surgery, the Carlins told him they wanted to go ahead with the procedure, adding that even though they would have a great team of people helping them, they couldn’t leave their two-year-old son, Connor, for more than six to eight weeks. The physician assured them he would work with the medical personnel at the Fetal Center at Children’s Memorial Hermann Hospital in Texas to make sure the parents could get back to Minnesota as soon as possible following the surgery. “Little did we know that we had touched him and that he wanted to keep our family together,” Carlin says. “That weekend, after we talked, Dr. Lillegard flew down to Texas, met with the team, and asked if they could come to Minneapolis to oversee the first fetal surgery here. When he called on Monday, he told us that if we felt comfortable,

he would like us to be their first fetal surgery patient at the Midwest Fetal Care Center, a collaboration between Children's Minnesota and Allina Health.” Following a week full of meetings during which they learned their daughter’s spina bifida was at L4-S5 and that the baby they named Clara also had a Chiari II malformation, a birth defect that can cause problems with balance and coordination, the Carlins decided to go ahead with the surgery. “I told myself as we were going through all the meetings: ‘If this works out, it’s God’s plan and I will go in with no regrets,‘” Carlin says. “Everything lined up so nicely. My mother-in-law said she would watch our son, family and friends stepped up and funded us the money we needed for me to take the necessary time off from work, and my employers said they would give me an extended leave of absence.”

"...he reassured us that the situation wasn’t as bad as we might think. He told us there is surgery and that we were great candidates for it. ...our baby would be okay.” connexions

61


photos courtesy of lynsey jaden photography

At 25 weeks pregnant, the expectant mother was ready to take the next step in trying to save her daughter's life. Carlin remembers that on the day of surgery, the doctor said he had never seen someone so calm and relaxed. “About four weeks after the surgery, Clara unfolded one of her legs and I felt her kicking me,” Carlin recalls. “When Clara was born April 25, 2016, her Chiari malformation had almost returned to normal and her back was fully closed with only a small scab. I believe this was due to God and all the great people praying for Clara.” “Doing amazing” is how Carlin describes her daughter nearly a year later. “She’s always happy, even if she doesn’t smile at first when she meets you. She will once she gets to know you.” A test in late January showed Clara has a healthy bladder and does not require catheterization. Most spina bifida babies have to be catheterized, so this was a big benefit and result of successful fetal surgery. And she doesn’t need a shunt, which many infants who don’t have fetal surgery get in their first month to help their hydrocephalus, the buildup of fluid on the brain.

Clara enjoys playing with her big brother, prefers toys that light up and play music, and loves to talk. “I really believe this was God’s plan for us,” Carlin says. “Fetal surgery was one of the hardest things I have ever done, but it was worth every second.”

The Midwest Fetal Care Center at Children's Minnesota in Minneapolis, is the first and largest advanced fetal care center in the Upper Midwest and one of only a few in the country.

“She does great sitting up with no help needed and pulls herself up on her knees to play,” her mother reports. “Since she has little feeling below the calf, we’re working on building (muscle) tone to get her to stand up fully.” As her first birthday approaches,

62

connexions

Clara growing and thriving with her family.


get involved: creative ways to support the fetal health foundation “How can I help?” It’s a question we at the Fetal Health Foundation (FHF) hear frequently. For some, the motivation to help comes because they have experienced a fetal syndrome; others reach out to show support for a friend or family member in the midst of a complicated pregnancy; yet others have no association with fetal syndromes, but have learned about the Foundation’s important work and want to assist. Whatever the motivation, there are a number of ways that you can help raise funds and awareness. Your contributions enable the Foundation to help families battling a fetal syndrome during pregnancy, serve as a liaison between families affected by various fetal syndromes and the medical teams providing care, and finance research into treating and curing intrauterine syndromes at fetal centers around the country. Events Spread the Word Planning a community event not only generates needed funds for the Foundation, but also helps

to educate the public about fetal health syndromes. When a mother in South Carolina arranged a trolley tour of her hometown and a painting-with-apurpose party, nearly 350 people participated. These events raised nearly $1,000 for FHF and also raised awareness about fetal health syndromes. Easily Set Up Your Own FundRaising Page One of the easiest and most popular ways to help is by setting up a personal or team fundraising page through CrowdRise. The Foundation chose this platform because it is easy to use and allows supporter donations to go directly for FHF. One mother set up a page and solicited contributions prior to participating in a half-Ironman. A father uses his page to generate support during mountain climbs in memory of his angel. Request Donations for Birthdays and Special Occasions Another simple yet meaningful idea is to request donations be made to the Foundation in lieu

of gifts for birthdays or other special occasions. Learn more about special gifts by contacting michelle@fetalhope.org. Mixing Fun and Fundraising Linking up with a local restaurant or entertainment venue is another way to generate funds for FHF and raise awareness of fetal health syndromes. The perk could be a percentage of the day’s receipts or a special entrance fee to a nightclub or event that includes drawings for donated prizes for which the dollars raised are donated to the Foundation. Charity golf tournaments, with a portion of the fees going to FHF, are also a popular fundraiser. Adding a silent auction to the event helps even more. This same approach can be applied to an art auction or even a poker tournament. No matter which method is chosen for raising funds to contribute toward supporting the work of the Fetal Health Foundation, one component is always the same: each donation makes a difference in the lives of a family.

connexions

63


*

*

fetal health foundation

*

*

*

beyond barriers: fetal centers with a purpose + international reach expands by talitha a. mcguinness

64

connexions

*


Fetal centers are necessary and crucial partners in the process of support. They provide answers, offer second opinions when it comes to the diagnoses, and offer the one thing every family is searching for... hope. Families come to the Fetal Health Foundation to find hope, information, and treatment. There are various support systems in place to accomodate families with one fetal syndrome or another, but one very crucial way we help them is to provide an accurate database of treatment centers offering hope for these conditions. Fetal centers focus on providing diagnostics, ongoing screening and higher level care for a mother when carrying a baby known to have an intra-uterine anomaly. It is their goal to help you make the best decision for and provide the best care for the unborn child. While all fetal centers have higher level ultrasound capabilities, a recent National Center for Biotechnology Information survey reports that only about 60% offer fetoscopic or fetal surgery. However, most centers consider the provision of information to families as their top priority, which better enables the family to be the

best advocate for their child in each situation. Fetal centers are a great resource for families for offering a second opinion when a diagnosis is made or when a specific treatment plan has been offered. They can also be an important step in the treatment plan when a family does not have a doctor nearby who can provide treatment, but needs to refer them to a specialist. The Fetal Health Foundation is able to work with Clinical or Nurse Care Coordinators at fetal centers on a case by case basis, in order to put families in touch with the specialists who are most experienced with their particular fetal syndrome and can help them best. For ideas of what to expect upon your first visit to a fetal care center, click here. Even as recent as 10 years ago, families may have been required to travel even as far as the other coast, as not everyone was fortunate enough to have a world-class specialist who could perform surgery for some of the more serious fetal syndromes. However, now there are nearly 60 fetal centers across the United States, many affiliated with children's hospitals as a new multidisciplinary model of care. They typically specialize in just one or a few select fetal syndromes to ensure that they are able to focus on improving treatments in offering the best possible care for each. When extensive travel or an extended stay is necessary, some fetal centers are able to offer stipends to help families with the financial strain. Once a family with a new diagnosis finds the Foundation,

the Foundation is able to connect them to fetal centers that are nearest that can also handle their case. At that point, the fetal center steps in to work directly with the family and their primary care provider for the pregnancy. Fetal Health stays in contact with the family throughout the pregnancy and especially once treatment is provided to ensure that the family is fully supported and feels they have someone on their side through one of the darkest times of their lives. While many of our centers are focused throughout the United States, recent strategies and networking opportunities have introduced the Foundation to a more global audience. The Fetal Health Foundation is proud to share that seven more international centers have asked to be included in our database. They are as follows: *Apollo Centre for Fetal Medicine, New Delhi India *Corniche Hospital Fetal Medicine Unit, United Arab Emirates *Heart of England, United Kingdom *Medical Center Immunology and Reproduction, Moscow Russia *Sheba Medical Center, Tel-Aviv Israel *Sir Gangaram Hospital, New Delhi India *Tawam Hospital, United Arab Emirates ********** Should your center for maternal fetal medicine be on our list? Feel free to add it to our database at fetalhealthfoundation.org/ fetal-center-resources/.

connexions

65


Everyone loves a good surprise,

but not when it comes to the uncertainty of the health of your unborn baby. The Fetal Health Foundation is on your side, every step of the way to ensure there are fewer surprises along your journey.

Connections. Answers. Support. Hope.

fetalhealthfoundation.org 66

connexions

Profile for Connexions

Connexions Spring 2017  

Fetal Health Foundation's annual publication geared toward educating the general public on fetal syndromes, as well as connecting families w...

Connexions Spring 2017  

Fetal Health Foundation's annual publication geared toward educating the general public on fetal syndromes, as well as connecting families w...

Advertisement