linking the medical & personal worlds
of fetal syndromatic issues
why we support research grants website a game changer
families offer hope:
spotlight on grant recipients 1
early arrival: tips for surviving the nicu
after loss, it does get better
WHERE SAVING LIVES IS OUR SPECIALTY
FETAL CONDITIONS WE TREAT Acardiac Twins Alloimmune Thrombocytopenia Alloimmunization and Fetal Anemia Amniotic Band Syndrome Bronchopulmonary Sequestration Cardiac Abnormalities of the Fetus Chorioangioma Congenital Diaphragmatic Hernia
Congenital Pulmonary Airway Malformation of the Lung Iatrogenic Preterm Premature Rupture of Membranes Lower Urinary Tract Obstruction Pleural Effusions Selective Intrauterine Growth Restriction Twin-Twin Transfusion Syndrome Vasa Previa
a look at the inside... 6
families offer hope as they remember their journeys
spotlight on 2015 grant recipients
11 12 16 18
when your due date comes sooner than expected: surviving the NICU when loss becomes a reality, heartstrings holds your hand
tips for working out safely during pregnancy
l.a. fetal surgery saves baby's legs
after loss, does it get better?
top 10 questions to ask after a diagnosis
in the face of difficulty, one mom pays it forward raising the bar: why we should support research grants what now? life after baby arrives...
the great candy run offers sweetest finish ever
when it’s time to call the doc
grief: it’s mine to share
johns hopkins fetal therapy experience
super heroes live among us
when the baby blues set in...
new frontiers in hope - colorado fetal care center
fetal health’s website a game changer for fetal syndrome diagnoses
maternity fashion: looking cute without breaking the bank
daddy duty: what to expect when twins arrive
nutrition & exercise for breastfeeding moms swaddle to help baby sleep soundly
cover photo courtesy of firewife photography
letter from lonnie... It is hard to believe that almost 13 years ago my wife and I were expecting twins and learned we would likely never get the chance to know them. We were diagnosed with a fetal syndrome called Twin-to-Twin Transfusion Syndrome. We went from wondering how we would be as parents to doing everything possible to save our children. We found hope through fetal surgery and today our girls are healthy, active, and bring joy to our lives in ways we could never have imagined. After learning how many pregnancies are affected each year, we knew more needed to be done. There needed to be more awareness, more research, more support, and most importantly, more hope. This led to the creation of the Fetal Health Foundation. Now in our 10th year, we have advanced in all of these areas, but more work is still to be done. Because there is a disconnect between the research taking place, medical practitioners, and those that have been and will be facing a fetal syndrome diagnosis, this is where Connexions comes in. Connexions is our annual publication connecting all the important pieces. It is a support tool for those who have been diagnosed, to keep them from feeling alone. It is a source of information on the advances that are being made through research. It is a resource for medical professionals and their patients. It is an opportunity to share the many faces of fetal syndromes. It is a megaphone for our voice in making a difference. Here's to more HOPE in 2016!
Contributors: Carla Oâ&#x20AC;&#x2122;Connell Dalia EL-Prince Cheri Timmons Michelle Somers Tammy Smith Julie McCaffrey Talitha A. McGuinness Mary Beth Martin Alisa Wyatt Paula Yost Schupp Lonnie Somers Dr. Rony Marwan Jena Miller Mike Crider Tara Chartrand Kate Nissen Moncayo Hindi Zeidman Kinan Copen Tamara Duker Freuman
Connexions is an annual 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. lonnie with wife , Michelle and daughters, Ashley and Aspen
a glimpse at the fetal health team... dalia el-prince, executive director A former Global Service Manager 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. Dalia recently relocated to Colorado with her family where she is actively involved in leading cultural inclusion and affinity groups at Graland Country Day School.
michelle somers, founder lonnie somers, founder
talitha mcguinness, marketing
tammy smith, board director erika ferraco, sponsorships
stacy hvinden, race director
creigh kelley, board director aran hissam, board director
mary beth martin, board director
we are help. we are hope. we are the... connexions
families offer hope
as they remember their journeys by talitha a. mcguinness
earning of a twin pregnancy brings so much excitement, and especially uncertainty with the journey for the next nine months and beyond, yet it also brings with it its own set of anxiety. Multiple births are at higher risk of a number of things including prematurity, yet no mom expects to learn that her baby has an intrauterine fetal syndrome, some of which are more common amongst multiple birth pregnancies. With literally hundreds of fetal syndromes known within the fetal/maternal realm and being researched today, most still have no known cause, and even more unnerving, are still beyond the mother’s control. The only resounding comfort is that the mother does nothing to cause it. When the Tyrells (pictured above) decided to add to their family, mom Jenna had no idea she would see two babies during her 10-week ultrasound. Like many new and expectant moms of twins, she was also quickly introduced to lingo never before heard. At 16 weeks, there was obvious size discrepancy and fluid levels were different, but not enough to
fall within the Twin-to-Twin Transfusion Syndrome (TTTS) category. TTTS is a rare disease that affects twins who share a placenta. The disease affects both babies because of sharing nutrition and blood flow through select vessels across the placenta. While one twin, known as the donor, is in jeopardy from anemia among other issues, the other twin (the recipient), likewise suffers due to the strain with which it is presented in trying to maintain for both babies. “We were introduced to [Selective] Intrauterine Growth Restriction (SIUGR), something we would deal with throughout the entire pregnancy,” said Jenna. “I was offered to terminate Baby B, but it was not something [we] could consider. At the time, surgery wasn’t commonly used for SIUGR, but we were ready to go to Florida to see Dr. Quintero, the Specialist that would perform fetal surgery if the fluid levels reached a certain point on each twin.” SIUGR occurs when there is unequal sharing of the placenta. Because this factor may result in poor nourishment of only one of the twins, resulting
in subsequent poor overall fetal growth, it is coined “selective”. With the likely help of unofficial bedrest at 20 weeks, the Tyrells never got to the point of requiring fetal surgery. Baby B continued to grow, but was 50% smaller than Baby A for most of the pregnancy.
about it in a nursing journal,” said mom Elizabeth. “The doctor agreed to a referral, but was not optimistic. We left feeling totally alone and devastated.”
While more than 800,000 families each year receive the news of a fetal syndrome, the Carreres did their own research and luke and ethan today found Dr. Quintero and the Fetal Hope Foundation who were a As it turned out, Jenna delivered the boys one constant support throughout the entire pregnancy. day shy of 34 weeks during a scheduled cesarean section, as the survivor rate with IUGR significantly Elizabeth said, “We felt strongly that the laser starts to decline after week 34. Luke and Ethan surgery was the only way to cure our babies and Tyrell were born on July 18, 2007, with nearly one give them the best possible outcome. For us, there month’s stay in the NICU. They both had some was really no other choice.” gross motor delays that required physical therapy, After having intrauterine surgery, Elizabeth but were caught up by age 2 and have not spent the summer on bedrest. She had weekly needed additional help since. The Tyrells say that appointments, yet at 23 weeks, there was bad life today is completely normal, chaotic and crazy. news. Something was wrong with Baby B’s heart. If ever diagnosed, Jenna strongly recommends “[Baby B’s] right ventricle was basically not working. finding someone experiencing the same journey. Our goal was to get them as big as possible for “I met a woman in Texas through the Fetal Hope Baby B’s anticipated open heart surgery shortly Foundation who was dealing with IUGR at the after birth.” same time as me. We became very close, despite our distance. She was one of the first people I The girls were born Adelaide and Genevieve called after each appointment, [as] no one really Carrere on September 5, 2007, at 35 weeks. understands quite like other twin moms do.” “The delivery was a STAT c-section and the babies were rushed to the NICU. Adelaide stayed for The Carreres learned of their twin pregnancy at two weeks without complications, but Genevieve an elective 10-week ultrasound. In retrospect, had was transferred to the Cardian ICU at St Joseph’s they waited until a later scan, they Hospital. However, her more than likely would have lost surgery was delayed one or both of their babies due because she was too ill to TTTS. to survive the procedure. Her lungs were the After their 18 week scan and an biggest problem, so by answer they did not understand, the time she was able the doctor said the words ‘Twinto breathe on her own, to-Twin Transfusion Syndrome’ her heart started doing and their lives changed forever. better,” said Elizabeth. “He gave very little hope and I “We were humbled to was actually the one who brought see the hand of God in up laser surgery, as I had read adelaide and genevieve at 5 weeks her healing. Our girls just Jenna saw the Perinatologist at least once a week. “I was on the phone with my family and friends after visits, and my husband was a rock star. If he was as scared as I, he never let me see it.”
turned 5 and they are happy, healthy and thriving.”
The plan was to be rescanned on Monday to see if things had reversed, and where intrauterine surgery might come into play.
In 2010, the family welcomed a baby boy to the mix. Elizabeth says that the girls know their story well, as it is such a part of who they are as a family. “The girls have seen the inutero pictures from my surgery and could point out their tiny body parts at a young age. We have also had the opportunity to introduce Dr. Quintero to our girls on two different occasions and continue to be so grateful for his many gifts.”
“That Sunday I started to feel ‘off’. I wasn’t feeling the babies move as much…I think I knew that something was really wrong,” said Angela. During Monday’s scan, the sonographer immediately said “I’m sorry, Angela. There are no heartbeats.”
the carrere family
On a different front were Ethan and Angela Stowell, who in 2011, were ecstatic to learn of their first pregnancy. However, at an early scan the Stowells discovered that they were expecting twins, and quite possibly, identical boys. “Everything looked fine until we went to our anatomy scan and Baby B was found to be smaller. It was not significant enough for intervention, but we were referred to Eastside Fetal Maternal Medicine for further monitoring,” including weekly scans for the next six weeks. During one of the scans, Baby B was diagnosed with SIUGR. His amniotic levels were lower, but at around the 24 week mark, the levels were evening out. The doctors were optimistic that the boys were healthy and that Angela would make it to 30 weeks before seeing issues with SIUGR.
photo courtesy of geoffrey smith
However, at 25 weeks, conditions worsened. While SIUGR was always present and they never received a diagnosis of TTTS, the tell-tale signs were present during an ultrasound. Angela said, “The ultrasound showed Baby B as the recipient. His amniotic level had jumped up to 10 cm and his bladder was huge. Baby A had little fluid around him and no bladder showing.”
“Everything after that was a blur. We felt like, at 25 weeks, we were so close to the end.” On July 20, 2011, Angela was induced and delivered two beautiful boys, Nathanael Hudson and Gabriel Charles. “We spent time holding them, cried a lot, and said our goodbyes.” Ethan and Angela received an outpouring of support from among their family, friends and peers within the restaurant business. In the months that followed, they wanted to make sense of their sons’ deaths and to redirect their grief toward something to help other families in similar circumstances. Angela said, “We got involved with the Fetal Health Foundation and drew upon our restaurant peers to put on [an awareness and fundraising] event that would bring the community together in a fun and unique way. The event was a huge success in spreading awareness about TTTS, and was a great way to honor our sons, too.”
the stowell family today
*** Note...the Stowell family was instrumental in helping the Fetal Health Foundation launch its thriving annual Research Grant program in honor of their boys, Nathanael and Gabriel. The program has now awarded over $100K to research facilities across the country.
research grant recipients
JHU Research team: Ahmet Baschat, MD, Ethan Nyberg, graduate student, Jena Miller, AP Obstetrics & Gynecology, and Warren Grayson, PhD
A Needle-Delivered Polymer for Spina Bifida 2015 Stowell Grant Winner The Foundation awarded the 2015 Nathanael and Gabriel Stowell Grant to Dr. Ahmed “Rony” Marwan at the University of Colorado to further his work in improving outcomes for babies diagnosed in utero with Spina Bifida. Spina Bifida occurs when an area of the spinal column does not seal up before birth. It is exposed like an open wound. Currently, fetal surgery can be done to seal it, but it is not minimally invasive. Dr. Marwan is working on a special polymer that could be applied by a needle via ultrasound guidance. Once this polymer is in contact with the baby’s skin, it would automatically harden, creating a “band-aid” and preventing the amniotic fluid from further damaging the baby. Even more amazing? Dr. Marwan’s team is also working to program the polymer so not only would it cover the wound, but it would also activate the baby’s own cells to heal the wound.
3-D Printed Ultrasound Models to Improve Fetal Surgery 2015 Brianna Marie Grant Winner The 2015 Brianna Marie grant was awarded to Dr. Jena Miller at the Johns Hopkins Center for Fetal Therapy. Imagine how difficult it is to plan for and perform open fetal surgery when you cannot physically examine the patient, a fetus. Examinations are all done from imaging, and mostly ultrasound. In the medical field, there are applications to map out tumors, etc. by using MRI and CT, but they are expensive. Ultrasound, in comparison, is inexpensive. The goal with this project is that by looking at a baby with Spina Bifida with ultrasound, the algorithms the research team creates can then be used to generate a 3D printed model of the fetus and its anomaly. Surgeons then have an exact, three dimensional model to use in planning and during the operation. The model will reduce risks and complications. Additional uses for an ultrasound-based 3D model are numerous, but specific to the Foundation’s cause, the treatment of many fetal anomalies that can be enhanced by 3D printed models.
FHF founders, Michelle and Lonnie Sommers, presented a $25,000 check to Dr. Rony Marwan at the University of Colorado School of Medicine.
To learn more about the Research Grants, visit fetalhealthfoundation.org.
when your due date comes sooner than expected
how to manage the nicu by julie mccaffrey
Twins and higher-order multiples have greater odds of being premature and needing a NICU (neonatal intensive care unit) stay. Although no parent wants to spend any amount of time in the NICU, if you are expecting multiples, it is best to know what to expect and be prepared. Start off by asking your caregiver to give you a tour of the NICU facility when you tour your hospital prior to delivery. Ask about private spaces for lactation and consultations, as well as family or sleep spaces. Find out if you are allowed to bring photos, your own linens and other keepsakes for each baby from home to decorate their incubators.
the first things you may notice when you initially see your babies in the nicu are the many wires and tubes attached to them. Some
of the most common are a pulse oximeter (a tiny light on their finger/foot), a cardio respiratory monitor made up of three patches, a blood pressure monitor, a temperature probe, a heart monitor, various lines for medicines, oxygen via tubes into the nostril or a respirator, and/or a gastric tube. Ask the care team to explain each one and why they are necessary.
get to know the staff, doctors and nurses that will be taking care of your babies. The
more you communicate with them, the more information they are likely to share. Don’t be afraid to ask questions along the way and if you don’t understand, ask for clarification. You will be faced with a lot of medical terminology and asked to make a lot of decisions, so try to ensure you understand each interaction with a doctor or nurse. Along the way, keep a log for each baby of important pieces of information you receive and concerns or questions you have so you can make the most of the daily rounds.
request kangaroo care and to interact with each baby as much as the hospital and care team will allow. Even if your babies are not
well enough for physical contact, you can interact by reading, singing and talking to them. Another great way to start bonding with your babies even while they are in their incubators is to be involved
in their care by helping change diapers, take temperatures, and if possible, to feed them.
consider setting up an online journal or blog to keep friends and family updated.
This will also serve as a place where you can share your emotions and thoughts while having a recording of your NICU journey. You can use this outlet as a way to celebrate milestones like weight gain or coming off a medicine. Another way to share your emotions is to talk with other parents in the NICU. They understand and may have resources or tips to share to improve your hospital experience.
your babies may find comfort from being next to their twin after birth. If they are healthy enough, some hospitals will consider putting twins together in one incubator for periods of time. Ask your care team what their policy is on your multiples sharing an incubator.
know that there is a chance that one infant may be discharged before their sibling and in
this case, communication with doctors and nurses is key. Find out when shifts change and ask for the best times to call and get updates.
most importantly, try to take care of yourself. You will have just given birth to multiple
babies and soon they will be home with you. This may mean asking for help and certainly saying ‘yes’ when it is offered. You need to properly heal and rest so you can be there for your babies during and after their NICU stay. Julie McCaffrey is a mommy to 3 kids, including a 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 parents navigate everything from baby gear to preparing for multiples, to getting back to work and getting the whole family on a routine. You can also follow her on Facebook.
when loss becomes reality... heartstrings holds your hand
by cheri timmons, lcsw
The holidays are considered to be a time of excitement and joyful celebration. But for families whose lives have changed through loss, it can be a series of anxious days, tearful thoughts and shadowed hope. At any time of the year, the death of a child is a traumatic loss that alters everything in life for a parent. Nothing looks the same, you feel uncomfortable in your own skin, and you wonder how life continues on around you. When the holidays come into view, grieving parents are faced with the challenge of how to navigate a time of year that is traditionally focused on family togetherness. Where are the blaring television commercials advertising how to survive the holidays without your loved one? For parents who have experienced the loss of a pregnancy, infant or child, the holiday season can feel physically, emotionally and mentally overwhelming. The world around you encourages participation in joy of the season, but you are surrounded by sights, sounds and
smells that spark memories of your loved one. At holiday time, grieving parents are faced with the question: Is it possible to grieve and celebrate at the same time? Although no simple guidelines exist that will remove the intense pain of losing a child, the following may serve as a roadmap to help parents better cope with their grief during a time of year that is joyous, as well as painful.
share your story
Although most parents receive genuine support from family and friends following the loss of a pregnancy, infant or child, after time passes, some parents find that outreach and validation from others decreases. It can be helpful to identify caring people in your life who understand and support you and where you are along your grief journey, especially during the holidays. Losing a child can be very isolating and lonely. Sharing your story can help to reduce this isolation. Retelling your story of love and loss, especially to those you trust, is an important way to express
and process what you are feeling. Each time you share your story, it may be different, which reflects the grief work you are doing. As the holidays approach, spend time with those who realize that your sense of loss is greater this time of year, and without judgment will listen when you need to talk about your child and what it is like to not have him or her with you this holiday season.
explore your reactions
It was once thought that grief progressed in stages with a different emotion distinguishing each stage from the next. Currently, grief is better understood as a complex process that is unique for each person. Even for mothers and fathers who have lost the same child, their grief reactions will naturally appear unique, as men and women express their grief differently. Following the death of a child, grieving parents experience numerous cognitive, physical and emotional changes (difficulty concentrating, fatigue, muscle pain, feelings of anxiety, resentment, or depression, among others). Take time to recognize the changes and reactions you are experiencing. Make a list by doing a head-to-toe body scan. Ask yourself: Do I have pain or tightness behind my eyes? Is my jaw tight? Are my neck or shoulder muscles tense? Move down through your body noticing other physical changes and write down your findings. Likewise, take note of your emotional and cognitive reactions, as well. Having this information
written down serves as an indication of the grief reactions you are experiencing as the holidays approach. It also allows you to track increasing or decreasing symptoms, acknowledge the impact your loss has on your life, and take active steps to manage the intensity of these reactions.
strategies for the holidays Although it may feel difficult to tend to your own needs at this time, focusing on the basics can help keep you healthy and resilient during the holidays. Fuel up on healthy, energy sustaining foods – choose water or unsweetened iced tea. Reduce sugar intake with more vegetables, protein (almonds, sunflower seeds), and legumes (edamame, lentils).
each time you share your story, it may be different, reflecting the grief work you are doing...spend time with those who realize your sense of loss is greater this time of year. Get enough rest – grief is emotionally draining and the holidays can demand even more from you. Finding it difficult to fall asleep? Take a warm bath, play relaxing music, or place a lavender scented cotton
ball inside your pillow case to take advantage of this herb’s relaxing qualities. Engage in physical activity – being active can help decrease stress and other grief symptoms. Take a walk at a nearby park, climb the stairs, do yoga, or park at the farthest end of the lot and walk the distance. Journal – whether handwritten or on your laptop, journaling provides a private space to express your thoughts and feelings. Also consider expressing your emotions through sketches or paintings. Avoid making major decisions alone – following the death of a child, many decisions are necessary. Consider engaging close family or friends to support you in making such difficult choices.
remember your child
When someone we love dies, our memories of them become a gift. Remember and honor your child by including his or her name in your holiday conversations. Invite family members and friends to share what they remember about your child from past holiday celebrations. This may develop into a new holiday tradition as a way to honor the love and lives of those who have passed away. Also, give your family permission to create new traditions that are more realistic and comforting. Consider making a special ornament every year. Perhaps your family could donate a toy to a needy child or money to a special cause in your child’s memory.
connect with others
While each bereaved parent’s
loss and grief experience is unique, it can be helpful to connect with other grieving parents. Strong bonds can develop with those who mutually understand, validate and support your loss, carrying you forward in your healing. Organizations within your own community may offer resources specific to parents of child loss. For example, Heartstrings速, Inc., a North Carolina non-profit organization, offers peer-based support programs connecting parents for grief support, bereavement education, and encouragement following the loss of a pregnancy, infant or child. Online support groups such as those found on Facebook, are another way in which parents are seeking connection, validation and hope in the loss community.
As you and your family navigate this holiday season, it is important to remember that it does not have to be perfect. It will look and feel very different because your loved one is not there with you. Take time to grieve, take time to find joy, and take time to honor the life and love of your precious child. Cheri Timmons is an LCSW, working as Director of Support Services with Heartstrings, a non-profit providing peer-based support to bereaved parents. Following her own pregnancy loss, she seeks to support other parents on their journey towards healing and hope. She finds each day a wonderful adventure with her husband and 5 year old son.
Heartstrings Pregnancy & Infant Loss Support was born out of the personal loss of twin infants, Michael and Zachary, by Tracey Holyfield in 2004. As she struggled through the months that followed the loss of her boys, Tracey was determined that no one should have to face the loss of their baby alone. The Pregnancy & Infant Loss Support Group was the first program offered by the organization. Today, Heartstrings offers 6-8 12-week support groups annually in the Triad area. To learn more, visit them online.
Miles, 8 James, 8 TTTS Survivor
emotions and outcomes around fetal syndrome diagnosis and support.
learn more and provide hope today. fetalhealthfoundation.org/donate/ 15
photo courtesy of drew photography & events
tips for working out
by alisa wyatt
orking out during your pregnancy offers incredible benefits, such as preparing your body for labor and delivery and enhancing your mood. However, you need to be extra cautious if you haven’t made exercise a regular part of your daily routine prior to pregnancy. Before starting any new workout routine, check with your doctor or midwife to be sure you’re not putting yourself or your new babies at risk. The below three exercises are great for toning and light aerobic activity. Do them at your own pace and gauge your exertion by trying to carry on a conversation while performing them. If you find that you’re breathless, slow down your pace or reduce the number in your sets.
*An hour of vigorous walking each day is one of
the best forms of exercise during pregnancy. If you already have young kids, place them in the stroller and make it a daily family routine. Try wearing a fitness tracker and ensure that you get at least 10,000 steps in every day.
*Daily squats help prepare your body for birth
and keep your legs strong and toned. Stand with your feet apart (shoulder wide), toes pointed out, and sit back with your hips while pulling
your stomach in. Make sure your knees stay aligned over the center of your foot, weight over your heels, and push into the floor to stand up. Build up to 100 squats a day (start with 10). You can do them throughout the day, such as 10 at a time while brushing your teeth, doing the dishes, or watching TV.
*Push-ups do much more than just tone your
arms. Doing the correct push-up form will keep your back and core strong, improve your posture, and help you pick up your babies while making you want to show off your toned arms. Start with 10 per day for a week, and then add 1 push-up every day until you reach 30 per day. Be sure to keep your belly button pulled in to your spine and body as straight as you can from head to toe, look slightly in front of you. If you can’t do them from your toes, feel free to modify by doing them from the knees. Try them in sets of 10 throughout the day. Practicing Pilates during pregnancy is another wonderful way to prepare for birth! When you’re pregnant, it’s vital to stimulate your circulation daily because the body is busy growing the placenta, providing nutrients to the babies, and coping with hormonal changes. A Pilates workout is one of the best ways to get that full body
circulation going, particularly around your vital organs where you need it the most. The benefits begin at the very first exercise in the method, The Hundred, which is all about deep breathing, mindful focus, and vigorous circulation. There’s nothing better for your babies than you keeping your body fresh and clean on the inside, which is exactly what Pilates does. A few side benefits of consistently practicing Pilates during pregnancy is how your body looks after you give birth, the ability to fit into regular clothes much more quickly, picking up your babies easier, not feeling as fatigued, minimized hormonal shifts, and fewer emotional swings. One word of caution with pregnancy: if you’ve never done Pilates before, it’s not a good idea to start when you’re pregnant because it works the core deeply. It’s better to wait until after birth to try new practices. If you haven’t participated in a particular workout activity, it is not advisable to introduce new strenuous workout activities during pregnancy. Even if you’re in good shape for one type of exercise, the demands of another can be a shock to your system and that’s not what you want when your body is already busy trying to grow your babies. Unless you’re already extremely active with excellent body awareness, it’s better to simply stick to the types of exercise you’ve already been doing for the duration of your pregnancy. New moms want to be fit and healthy when their babies arrive,
so using common sense will help expectant moms continue to stay active while reducing the risk of injury. Incorporate these safety tips into your pregnancy and post-pregnancy workouts:
*Trust your body. If something
feels uncomfortable, leave that exercise or movement out. Your body will change from week to week, so be prepared to shift your plan and simplify your routine as you go. If you’re working with a trainer, tell him/ her what you’re experiencing so they can modify the plan. Don’t just assume that they know what’s right for you --- every pregnancy is different and you are the best judge of what feels right or wrong.
*Before doing any exercise,
make sure you are dressed appropriately with proper foot gear. Dress in loose fitting, breathable layers that can be peeled off so you don’t overheat (this can happen very easily during pregnancy, and especially when working out). As your pregnancy progresses, balance will become an issue, so good shoes will be crucial. Don’t forget to warm up and cool down after any strenuous activity so you don’t strain your muscles and ligaments or experience post workout pain and discomfort.
*Be sure to stay hydrated to
prevent early contractions from starting. Drink a full 8 oz. glass of water before you get started, drink throughout your workout and definitely after. Many healthcare providers recommend an 8 oz. glass of water for every 20 minutes of exercise, and more if you live in a hot climate.
*Remember to not overdo
it. Your body should feel like it’s working, but don’t work so hard that you overheat. Raising your core temperature above 102̊ F for more than 10 minutes can harm your unborn babies. If you feel dizzy, nauseated, or short of breath, slow down or stop the activity until you can cool down.
As your pregnancy progresses and your belly size increases, your sense of balance may change. When getting up from the floor, brace yourself against a solid object to help you stand up without feeling wobbly. Pregnancy is a time to embrace and prepare for the arrival of your bundles of joy. Finding time to take care of yourself needs to be at the top of the list. Incorporating exercise and stretching into your daily routine is an easy way to boost your spirits while conditioning your body for childbirth. You are the best judge of you; your body is the best indicator of how much you can safely exert yourself. Practice these tips and you’ll be fit and ready for the arrival of your babies when it’s time!
Alisa Wyatt is a fitness and wellness expert and the founder of AthletiCulture and Pilatesology, which provide online classes that help you transform your body and your wellbeing pre and post pregnancy, and beyond. Alisa lives the philosophy that health and fitness is a way of life and shares it by educating parents and other busy people on ways to relax, tips on carving out time to exercise, and healthy family activities. To learn more, visit her sites online and follow her on facebook.
a life-saving resource for expectant parents When my wife and I started trying to get pregnant, we were a little naive to how easy it would be. What went from excitement of learning we were having twins, soon turned to worry, as doctors mentioned foreign phrases like “fetal syndrome”, “TTTS”, and “high risk specialist”. We were shocked. How could this happen? Did we cause this? What now? We were only 20 weeks into the pregnancy and for the duration, it became a rollercoaster ride of emotions, scrolling the internet to learn all we could about the diagnosis, doctor appointments for monitoring, rest and proper nutrition, and finally, a laser procedure for which we travelled clear across the country that saved my girls’ lives. TTTS would have killed my twins if not for our doctors and the in-vitro laser procedure that now saves hundreds of thousands of babies each year. Like us, families diagnosed with a fetal syndrome often have only a few emotional days to find a life-changing medical treatment in efforts to save their baby or babies and by kinan copen
by lonnie somers
realize their dreams of becoming a family. Sadly, they’ve been told there is no hope for their baby or babies to survive. In this terrifying moment of realization, my wife and I realized it didn’t have to be that way. What if there was a place where families who receive a diagnosis could go to learn more about their situation either medically or from other families who may have similar experience? What if their helplessness was replaced with hope? This is when we decided to create the Fetal Health Foundation. It became a tangible way to provide emotional support and a direct connection to leading fetal treatment centers and doctors around the world. Our daughters were our inspiration, and we love knowing we’re helping other parents going through similar circumstances. What started as a fun, local 5K to spread awareness about TTTS has now become a multi-city fundraising and awareness event, and a 12 year long journey to support parents when they need it most. In the beginning, we served so many families facing TTTS and other
multiple birth issues mainly because it’s what we knew and how we could most easily relate, but through our connections and experience, we now offer support to even more syndromes completely unrelated to twins. With so little information available at the time of our diagnosis, my wife and I wanted the Foundation to truly be a source of hope and information. We created a unique Medical Advisory Board that is available on our website and is the only way we are able to ensure accurate information and even provide second opinions for families when necessary. The Board is comprised of some of the top fetal and maternal specialists across the country, many of them also fetal surgeons who provide life-saving care when a diagnosis is given. More recently, the Foundation has provided over $100K in research grants, funding new treatments and technologies to save more babies’ lives. We are excited to see those funds used for efforts toward creating better imaging and equipment used in the surgeries of so many fetal syndrome diagnoses around the country. It is possible that today, hundreds of parents will
receive a fetal syndrome diagnosis and sadly, more than 200 babies will die due to lack of information and absence of treatment. Created to showcase one of the most robust online repositories of fetal syndromes, Fetal Health’s website provides information on upwards of 100 syndromes, including an explanation of the diagnosis, treatment options available, as well as fetal centers around the country that provide that care. Now and never before has there existed a site with so much information about multiple fetal syndromes in one place. This dynamic changes everything for an
expectant parent facing a fetal syndrome diagnosis. The website also provides stories to help share the journeys of families and how they overcome obstacles in their fight to save their babies’ lives. The message is clear: you are not alone in this fight. After just a few short months, the site is reaching families in our own backyard, but as far away as Malta, Australia and Indonesia. It makes it clear how badly parents need a source of hope during one of their darkest hours and how we can be that hope.
the somers fa mily *The Foundation became a registered 501(c)(3) non-profit in 2006. It depends largely on funds raised at events and through individual donations. To learn more about the Foundation and how you can get involved at an event or through online support, visit www.fetalhealthfoundation.org.
Lonnie has over 10 years’ experience serving across various areas in the event industry and is the owner of Hallucination Sports. He is also the Founder of the Fetal Health Foundation, a non-profit organization he and his wife created in honor of their identical twin daughters, and successfully created a national fundraising and awareness event, The Great Candy Run, to benefit the Foundation. In his free time, Lonnie enjoys spending time with his family, running, and cycling.
Conditions Treated Twin-Twin Transfusion Syndrome Acardiac Twins Alloimmune Thrombocytopenia Amniotic Band Syndrome Aortic Stenosis Congenital Diaphragmatic Hernia Fetal Cystic and/or Solid Chest Mass Iatrogenic Preterm Premature Rupture of Membranes Isoimmunization and Fetal Anemia Lower Urinary Tract Obstruction Selective Intrauterine Growth Restriction Spina Bifida
“A particular strength of our program is our multidisciplinary approach to fetal care. Our ability to confer with a variety of subspecialists on a daily basis translates into improved outcomes and patient satisfaction.” Ramen Chmait, M.D.
Director, Los Angeles Fetal Surgery
LOS ANGELES FETAL SURGERY SAVES BABY’S LEGS Michelle and her husband were told by their doctor that there was a problem with the second-trimester prenatal ultrasound... their unborn child was in jeopardy. Their baby had tight bands wrapped around both legs, and there was concern that the legs could be damaged or even amputate over the course of the pregnancy. As the fetus grows in the mother’s womb, the constriction worsens, ultimately resulting in lack of blood flow to the legs. Michelle and her husband were informed of the diagnosis... Amniotic Band Syndrome, a rare pregnancy complication seen in only 1:1500 births. Her obstetrician referred them to Los Angeles Fetal Surgery. “It was a very terrifying time,” Michelle recalled. “We flew to Los Angeles in between hurricanes.” Dr. Chmait and his team confirmed the findings. Indeed constriction bands were wrapped around both legs causing significant swelling. The right leg showed absence of blood flow below the level of the constriction. Furthermore, the umbilical cord was adherent to the amniotic bands around the baby’s legs. If the cord becomes pinched off, the baby will die. Dr. Chmait explained his concerns to the couple. “Our options were bleak in whether our baby was going to make it or not,” said Michelle. “It was very scary. We took a day to weigh our options.” The determined couple elected to proceed with fetal surgery to release the constriction bands and untether the umbilical cord. “I had never had surgery or even had an IV placed before. We felt like we had the support from our family as well as from Dr. Chmait and his staff to go through with this challenging decision.” Michelle was admitted to a Los Angeles hospital at 21 weeks’ gestation. In the operating room, after providing Michelle with anesthesia and sedation, Dr. Constrictive Amniotic Band Chmait and his team inserted a trocar, a straw-like tube, into her womb. Once inside the womb, a camera at the end of the scope
About Los Angeles Fetal Surgery Since 2006, the University of Southern California and Children’s Hospital Los Angeles have worked collaboratively to provide minimally invasive fetal treatments for a variety of fetal ailments.
Collaborative Los Angeles Fetal Surgery is part of the Institute for Maternal Fetal Health (IMFH), a collaboration between the University of Southern California and Children’s Hospital Los Angeles. The IMFH specializes in providing comprehensive multidisciplinary health care to fetuses with complex anomalies. Due to its unique collaborative structure, patients referred to the Los Angeles Fetal Surgery program have access to a wide variety of services, including specialists in cardiology, craniofacial, genetics, infectious disease, neonatology, neurology, neurosurgery, ophthalmology, orthopedics, otolaryngology, radiology, surgery, and urology.
clearly showed the constriction bands. But there was a problem! The right leg beyond this constriction band already appeared dusky red and discolored with peeling skin. Was this part of the leg beyond repair? Using endoshear scissors that were inserted via a small operating channel within the scope, the amniotic bands were cut. This resulted in the release of the bands around the legs and the umbilical cord.
For More Information Contact us Phone: 323-361-6074 Fax: 323-361-6099 Visit our website www.LAFetalTherapy.org
The next day, ultrasound findings confirmed a successful procedure with restoration of blood flow to both legs, and an unrestricted free-floating umbilical cord. However, Michelle and her husband were counseled extensively regarding the unknown fate of the right leg, including the possibility of profound limb dysfunction or amputation. This brave couple elected to continue the pregnancy, and subsequently delivered their baby at 36 weeks and 6 days’ gestation via cesarean section. At birth, the baby’s legs looked remarkably healthy, and at one year of age, the child is cruising and standing on his own. The doctors are optimistic that he will have no problems doing what boys do best... running and jumping. This is the first reported case of amniotic band syndrome in which blood flow and function were restored in a limb that completely lacked blood flow and showed signs of dying tissue prior to surgical intervention. This favorable outcome was likely due to the timeliness of the in utero release of amniotic bands, the plasticity of fetal healing, and the parents’ determination to fight for their baby’s life. “We are very grateful for Dr. Chmait and his staff for being so supportive during the most difficult time of our lives,” Michelle expressed.
Experienced Los Angeles Fetal Surgery has performed over 1000 fetal interventions, making it one of the busiest in the country.
Research Los Angeles Fetal Surgery is an active member of the US Fetus Consortium, which is a formal a collaboration between fetal surgery programs in the United States. The US Fetus Consortium members work together to carry out comprehensive clinical trials.
Los Angeles Fetal Surgery Reunion 2014
Every two years, Dr. Chmait’s patients get together to celebrate their successful surgeries, share experiences, and introduce their kids to Dr. Chmait. In 2014, 457 patients and family members attended the reunion. We look forward to hosting the 2016 biannual reunion this coming April.
does it get better?
by dalia el-prince
neonatal or infant loss is a phenomena that spans race, religion and socioeconomic status.
according to the march of dimes, infant death can be caused by birth defects, premature birth, and a number of other health conditions, with 50% of them occuring at or near full term. 22
Does it get better? Today I was asked, does it get better after loss of your baby? Does it? It’s a question I often struggle to answer, and it’s a difficult one for anyone who has experienced it to answer. My story, I am learning, is way too familiar. I lost my first child in the delivery room at 37 weeks on July 27th, 2003. I remember each of the details of the day. I remember what I was told when I woke up from anesthesia. I remember what nurses told me as they entered my postbirth delivery room. I remember my screams from pain and not knowing how I was going to survive. Every detail, every moment, and it’s more than 12 years later. How do I survive this loss? I am not sure how I got to where I am today, but I am sure you never forget. You go through the motions of living, just trying to survive day in and day out. You will have moments where you recall the pain and break down, and then you remind yourself you are blessed in other ways. It’s not easy, even after all of these years and so many
good and promising memories have come since. If I learned one thing, it is don’t go down the path of regrets. I wish I had been given the chance to hold my child before they took her away. I wish I wasn’t put to sleep for my emergency C-section. I wish I had asked for a baby monitor during delivery. I wish... I wish... I wish... I’ve learned that going down this path is a dark one, one it’s hard to get out of. So I try to look at my surroundings, what I have become, my children that now jump on me with joy, and think today is going to be okay. I will get through this. I am writing this to share the struggle to survive is not an easy one, but you will be okay. You will make it to the next day, as hard and inconceivable as it may seem in many moments. You will be asked, “how many children do you have”, and will struggle with what is the right answer? You may even begin by counting your angel and sharing your story, and may later keep that memory and those moments in your heart for you alone. You will hear women talk about their delivery and how amazing it was, and wonder “why me?” You will read articles that debate whether breastfeeding is better than bottle, and think “I just wanted my baby!” You will go through many thoughts and wonder “am I alone?” and “does everyone not know the pain I am in?” I am writing this to tell you, you are not alone. I have been spending my last 12 plus years just moving forward, breaking down when
memories are triggered, or when I need to use my baby’s name on another child. I have not been outspoken and shared my story before, as I do not want to hurt my family around me, make them go through the pain of remembering, or my children becoming aware of this loss that was before they were even born. Today though, when I was asked by a Mom, “does it get better?”, I opened my heart and shared my story. It made me want to share it further to let other moms know you are not alone. Now I try to make a difference by investing my time and experience in the hopes of bringing more awareness to fetal syndromes and in the hopes of supporting any mom, anywhere that experiences loss. I hope to make a difference so that no mom goes through the experience of losing their baby at birth. In trying to answer “does it get better?”, it does...hour by hour, day by day. There is hope for a brighter tomorrow, even if it feels like there is none. With so many families affected each year, you are nowhere near being alone in this unfortunate and tragic struggle. 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.
infant loss... by the
NUMBERS • Almost 50% of infant deaths
occur at or near full-term and often seem to be otherwise healthy babies.
• Nearly two-thirds of all still-
birth deaths remain unexplained. This is more likely due to a failure to investigate the deaths, rather than a medical mystery.
• Some of the more common
diagnosable causes for stillbirth are: placental abruption and other placental problems, birth defects and chromosomal abnormalities, uncontrolled diabetes, preeclampsia, cord accidents and infections.
• The risk factors for stillbirth
include: advanced maternal age, maternal obesity, maternal smoking, prior stillbirth, neonatal death or other fetal losses, uncontrolled maternal diabetes and maternal hypertension.
• The Pregnancy and Infant
Loss Awareness Movement began in the US in 1987, and now includes Canada, the UK, Wales, Australia, and Italy.
• Pregnancy and Infant Loss
Awareness Day is celebrated worldwide on October 15th, with a Wave of Light, a lighting of candles at 7pm. *sources: First Candle, American Pregnancy Association
things to do after a diagnosis
Nothing prepares you for the news of a fetal syndrome diagnosis. It is as if your child is drowning, but you are unable to jump in and try and save them. This is a very frightening time with many challenges ahead. You may feel lost, confused, angry, sad, and often hopeless. To ensure you can best handle most aspects of a diagnosis, it is best to have a plan in place. While you may feel alone, the Fetal Health Foundation is with you every step of the way. Following, we provide to you the necessary things you should ask when diagnosed.
You will be the #1 advocate for your baby(ies) – We rely a lot on our medical professionals to guide us and have all the answers. Truth is, when you deal with fetal syndromes (many are very rare), our medical professionals may not have all the answers. You are now the main advocate and need to be part of the “team” in deciding what is best for
by lonnie somers
your babies. That means learning as much as you can about the syndrome. Don’t be afraid to ask questions. No question is silly.
2. Learn as much as you can about the diagnosis – Likely when you first were given the diagnosis, you absorbed about 50% of what the doctors told you. Find reputable resources like the Fetal Health Foundation, and reach out to learn as much as you can about the syndrome. Be careful, as there is a lot of misinformation and noncredible sources. It can be hard to tell the difference, so be sure to start out with credible sites such as those of the Fetal Health Foundation, NIH, WebMD, CDC, etc. These sources can be helpful in gaining a better understanding of what you are facing, what treatments are available, and where those treatments are being performed. It is important that wherever you get your information
(again be careful that they are credible sources), that it is easily understood. It should be easy to understand and should explain to you any clinical terminology. It is also important to understand that while support groups can be very helpful, they cannot offer advice provided by trained medical professionals.
Build a support network – Our first instinct is to turn to our families for support. Likely your spouse is hurting, too and while you do need to be there for each other, you will need some outside support, as well. Understand that telling family and friends comes with a mixed bag of reactions and emotions. Some understand the gravity, yet some don’t and cannot relate, while some frankly can think you are overreacting. Realize that while our friends and family mean well, they sometimes also have a hard time knowing
the right words to say, and how to truly relate. Realize they have a relationship with you, but do not have the emotional tie, as you do, to your baby. They too can and should reach out to reputable groups to learn a bit about what your baby has been diagnosed with. You should reach out to support groups on the internet and Facebook. No one will understand more about what you are going through than others who have been or are currently going through it. My word of caution though is that while these support groups can be very helpful, you can also find yourself with everyone thinking they are an expert.
expertise, it can be intimidating, but I have found that most of the experts are amazingly kind, gentle, and attentive to your care. It is important to ask many questions and it is also advised to seek a second opinion. While most specialized treatment centers may not be close to you or even in the same state, many will consult with you over the phone. Here is a list of important questions you should ask:
4. Build your medical circle of
*How many cases have you treated?
care – You will need generally many medical professionals involved in your care. Think of it as a circle of care around you. You are the biggest part of this circle and remember, your opinion counts in your and your baby’s care. You will want in your circle your OB/GYN, Maternal Fetal Medicine specialist (and/ or perinatologist), and an expert usually from a specialized fetal treatment center (Fetal Health has a list of these centers on our website and the syndromes they treat). Most importantly is that you are comfortable with your circle of care. If not, then find those with whom you are comfortable.
Get organized – Life as you know it is going to be on hold for a while. You will be faced with many appointments, so find a way to record appointments and more importantly a place you can write out any questions you have (as well as the answers).
Ask questions and get a second opinion – As you move up the medical chain in
*What do I need to know about the syndrome? *How long have you been treating the syndrome? *What are the treatments you offer (pros and cons and differences vs other centers)? *What are the outcomes (both at birth and down the road)? Most importantly, be sure you are very comfortable with who you will ultimately choose as your primary treatment center. You generally have a choice, despite where your OB/GYN or high risk doctor has referred you. If a center or medical professional doesn’t want to answer these questions, that likely means they don’t respect your advocacy role and we would recommend seeking someone else.
7. Deciding on treatment – Usually
the window for treatment is a small. This is due to either the grave circumstances of the diagnosis (meaning there is little time to do something), or they want to prevent further issues to the baby and need to act fast. We cannot stress enough the importance that you are part of the decision of what to do. Be sure you have educated yourself, that you have asked many questions, and that you are comfortable with your and your partner's decision. If you have any doubt, be sure to reach out to groups like us. The worst
situation is to do something and regret it because you were not well informed. One of our main missions is to prevent parents from second guessing and regretting. You don’t want to ever have to wonder “what if?” No matter what course of treatment, the decision is yours, not that of some social media group, or friends and family.
Have a delivery plan – It is very common with most pregnancies that are affected by a fetal syndrome to deliver prematurely. Understand from your doctors what things they will be looking for that would indicate your baby needs to be delivered earlier than full term. Understand that if your baby is born early, what will take place, when, where and how. This could also mean a stay in the NICU (Neonatal Intensive Care Unit). The NICU can be intimidating, as all the babies tend to look so frail. They are stronger than you think. Almost all hospitals will allow you to tour the NICU, so take advantage of this courtesy. Become familiar with it and understand how your baby will be cared for there. Understand the types of machines your baby may be on/in and the reasons for them. This will lessen the impact of it seeming like such a scary place should your baby require a visit here.
Have a plan for compassionate delivery – While we wish it wasn’t the case, sadly we do lose babies to these syndromes. If the syndrome is serious enough where this is a possibility, be sure you discuss with your partner and your medical team how the delivery will take place. Compassionate delivery equates to developing how you want to deliver your baby, who is there to support you, and whether or not you will want to have some pictures taken (there are many support groups that help you in this area --- contd. pg. 45
The best beginnings come from early intervention
At the Johns Hopkins Center for Fetal Therapy, our highly specialized team has a proven track record of successfully treating rare and complex prenatal conditions, such as twin-to-twin transfusion syndrome, congenital diaphragmatic hernia, spina bifida, lower urinary tract obstruction, fetal hydrops, and more. We provide comprehensive care for you and your baby each step of the way with a team of maternal, neonatal and pediatric specialists. A leader in the field of fetal therapy, we offer breakthrough treatments and innovative clinical trials.
Call: 410-502-6561 or visit hopkinsmedicine.org/fetal-therapy
GYN140924 Baltimore magazine 2014 Top Docs issue - Fetal Therapy POM Ad_7.indd 1
2/15/16 6:06 AM
Peyton & Samantha, 2 TTTS Survivors
Ashley, 12 Aspen, 12 TTTS Survivor
in the face of difficulty:
how one family received hope and gives back by carla oâ&#x20AC;&#x2122;connell
Kate Young doesn’t know what would have happened if she and her husband, Randy, had not contacted the Fetal Health Foundation when she was five months pregnant. “It was a huge turning point for us,” she admitted. The Youngs were thrilled when they discovered they were expecting twins, but when Kate went into labor at 20 weeks, they were told the babies had twin-to-twin transfusion syndrome (TTTS), with one not getting enough blood and nutrients while the other was getting too much. Receiving the diagnosis was bad enough, but they were also told that nothing could be done to save their sons; any attempts to do so would result in irreparable brain damage. Their happiness replaced with fear, the couple set out to learn all they could about TTTS. That search led them to the Fetal Health Foundation, the Littletonbased national nonprofit that’s leading the way in supporting families and medical treatment centers dealing with intrauterine fetal syndromes. Since its inception, the Foundation has served as a liaison between families affected by various fetal syndromes and the medical teams available to provide care. With the Foundation’s help, the Youngs were able to contact expert fetal surgeons throughout the United States who were optimistic that their precious babies could be saved. From Milwaukee, Wisconsin, Dr. Julian De Lia provided guidance to medical personnel at Denver’s Presbyterian/St. Luke’s Medical Center for treating Kate
were] there in our darkest hour to give us hope that anything is possible. Young and the twins. Following surgery and six weeks of bed rest, edema began to cause the expectant mother to gain two to five pounds of water weight daily. Two weeks later, 28 weeks into the pregnancy and with fluid filling her lungs, Kate Young gave birth to one pound-13 ounce Conor and two pound-11 ounce Liam on February 8, 2010. Small, but alive, the twins spent 100 days in the NICU before finally heading home, still on oxygen. “The Fetal Health Foundation was there in our darkest hour to give us hope that anything is possible,” said Kate Young. “They gave us the help we needed to find the right doctors.”
the early years
Throughout their earliest years, Conor and Liam continued to face a variety of health challenges. Due to their prematurity, the boys developed broncho pulmonary dysplasia and struggled to breathe. Although they were growing, the babies spent 18 months on oxygen, underwent several surgeries, suffered collapsed lungs, were hospitalized for every illness, and lived in isolation. Still turning blue at three-and-a-half years old, the twins spent the summer in the hospital undergoing test after test. Doctors feared their hearts were starting to fail, that they had developed pulmonary
hypertension, and that any stress -- running, high altitude, illness -- was too much for them. Randy and Kate Young decided that moving to a lower elevation could help their sons and, with the support of their employers, relocated to Washington, D.C. At the lower altitude, the boys improved and began thriving; their lungs grew bigger and their hearts grew stronger. After a year away, the family returned to Colorado, where Conor and Liam are doing well and started kindergarten this fall. “So much was done for us over the last five years,” recalled Kate, who is thankful not only for the assistance of the Fetal Health Foundation and all the medical personnel who contributed to identifying and administering the best treatments for her sons, but also for all the love and support provided by family and friends throughout numerous hospital stays and everyday life. Now that they are back home, and with more time and energy, the family decided it would be a great idea to give back, doing something every month to help someone else. Through a neighborhood Facebook page, the Youngs keep informed about nearby residents in need and provide home-cooked meals. “I have Liam and Conor help me,” their mother said. The family also collects travel-size toiletries to make care packages for parents of hospitalized chidlren. In an effort to give back in an even bigger way, Kate recently
participated in her first Half Ironman at Lake Tahoe to raise money for the Fetal Health Foundation. It was a successful day: Kate finished 37th in her age division and raised more than $1,300 to give help -- and hope -- to other families dealing with fetal syndromes. The Foundation uses funds to provide awareness on fetal syndromes, as well as the funding of research grants to provide improved treatment options. Last year, the Youngs visited Denver’s Washington Park, joining more than 5,000 others who show support to those who have been affected by a fetal syndrome in honoring those lost and celebrating children who survived during the 12th Annual Great Candy Run 5k. The Great Candy Run is a national race series featuring a 5K run/walk, Gumdrop Kids’ Fun Run and competitive Stroller Division. The event also includes on-course entertainment, a costume contest and tons of treats at the sweetest finish ever. Currently hosted in Denver, Jacksonville and Minneapolis, proceeds benefit the Fetal Health Foundation and more specifically, its growing Research Grant Program. Kate’s twins participated in Denver’s Great Candy
Run alongside their father and mother. Perhaps the boys already understand that you’re never too young --- or too old --- to jump in and give help and hope to others.
kate’s winning smile at the finish! Carla O’Connell’s professional experience includes national non-profits, corporate and government communications, advertising and marketing, and magazines and newspapers, including the US Anti-Doping Agency, the US Olympic Committee, and the Department of Defense.
Parker, Jackson & Smith, 10 mos. TTTS Survivors
Leading the way in treating patients at their most vulnerable: before theyâ&#x20AC;&#x2122;re born Equipped with the technology and expertise to deliver any fetal treatment currently available anywhere in the world, The Colorado Fetal Care Center at Childrenâ&#x20AC;&#x2122;s Hospital Colorado posts outcomes well above the national average for an array of fetal anomalies, including myelomeningocele, twin-to-twin transfusion syndrome and congenital diaphragmatic hernia. Learn about our Fetoscopic Endoluminal Tracheal Occlusion (FETO) program at coloradofetalcarecenter.org Colorado Fetal Care Center 855-41-FETAL
Fetoscopic Endoluminal Tracheal Occlusion (FETO)
1 of only 2 approved FETO trial sites
1st FETO performed in the U.S. under a new FDA investigation device exemption
92% Our CDH survival rates are the best in the nation
why should we support
by rony marwan, md
A handful of world-class centers offering innovative cutting edge fetal surgery are just the tip of the iceberg. What people do not see, and certainly may not appreciate, is the amount of hard work and research efforts behind these successes. Can we perform cutting edge surgery, offer fetal intervention or understand the natural history of a disorder without research? NO WAY! What makes it possible to develop any cutting edge therapy is the plethora of background knowledge, understanding the disease process, and having a firm grip on the potential effects of an intervention. A bench top idea or an experiment is the budding tree that will one day, with the right set of minds, and the right support from visionary individuals and entrepreneurs, be the catalyst for something innovative and novel that surprises us all and captures our imagination. The current state-of-the-art fetal surgery to close an open spina bifida defect is the result of cumulative research efforts that demonstrated the feasibility and success of such an approach. There are numerous examples of a new idea that was recognized and supported by foundations prior to becoming a main stream National Institutes of Health funded study. The encouragement, support, and positive feedback accumulating with the aid of these research grants are invaluable. So, are we supporting the success of individuals, promoting growth of a scientist, participating in the
advancement of the field of medicine, or helping someone, somewhere to have a better life? Are they mutually exclusive?
care, minimizing risks to both mother and baby, and potentially providing better neurological outcomes.
I would argue that supporting research efforts does it all. What is better than providing an aspiring scientist to pursue their idea, grow it and make it the reason why the medical team provides an outstanding care to a well-deserving patient?
Supporting research in an essence is the reason why we can do what may seem impossible.
To give specifics, through a grant provided through the Fetal Health Foundation, my lab was able to work on developing a novel gel to use as an alternative to open repairs of spina bifida defects. The success of this approach will allow for earlier, less invasive approaches to fetal
Dr. Rony Marwan specializes in fetal and pediatric surgery at Children's Hospital Colorado. Recognitions include Outstanding Senior Resident Teaching Award, Excellence in Research, ASGT Travel Grant Award, and SUS Young Investigator Resident Award. He attended medical school at AinShams University, Research Fellowship at Cincinnati Children's Hospital, and Pediatric Surgery Fellowship at Children's Hospital Alabama.
research grant process... The overall mission of the Fetal Healthâ&#x20AC;&#x2122;s research grant process is to improve health outcomes for pregnancies and infants affected by fetal syndromes. By stimulating and supporting interdisciplinary research from within the maternal/fetal medicine field focused on pregnancy and treatment(s) of any one of a number of fetal syndromes, the Research Grant will subsequently improve successful fetal development and the overall health of the newborn(s). The cycle opens in March of each year, with a deadline of May 15th. Awards are announced and made in July. Criteria that the Grant Advisory Board reviews and weighs heavily include, but are not limited to the following factors: *specific aims/objectives *support & key personnel
*research methods *budget & timeline
If interested in applying for a research grant with the Fetal Health Foundation, please email talitha@fetalhope. org to ensure you are on the mailing distribution list for updates and to receive the application during open cycle.
what to expect of life after baby arrives by paula yost schupp
“It was the best of times, it was the worst of times . . . “ If using Charles Dickens to describe the early days of motherhood seems a little melodramatic, you haven’t been through it. Pregnancy is rough. My first son was full term and weighed 8lbs, 13oz. In the weeks prior to his birth, I was waddling about and every part of my body ached. I couldn’t stand for very long. I randomly wet my pants. My private parts were swollen and uncomfortable. I was ready to evict him. I was also terrified and full of anticipation. I had been told in my sixteenth week of pregnancy that he had a complete bilateral cleft lip and palate (no roof in his mouth and no upper lip). The doctors had told me he may not be able to eat, which could require surgery, and I was scared to death. Thankfully, he rolled out and was able to eat from a special bottle. After all that, taking him home should be easy, right? It was time for me to enjoy the beautiful piece of human
artwork I’d spent nine long months creating and that I’d wanted with all my heart. Funny enough, my adorable child screamed every three hours to eat. It didn’t matter to him if I was asleep or that my body was healing from his surgical removal. He wanted food and he wanted it now. Remember how I was afraid he couldn’t eat? Yeah, completely unfounded fear. He could eat just fine. He just couldn’t attach to my breast. I don’t do Mom Wars, but I really felt he needed breast milk since he did have a special need and would be having surgeries in his first year of life. So, not only was I feeding him via a special bottle that required more work than average bottles, I was also hooked up to a machine pumping milk every three hours. My husband was as helpful as possible, but he can’t make milk. In those first three months, I walked around like a zombie. I pumped milk. I fed. I slept when I could. Sometimes I almost felt sleeping was pointless because the second I fell asleep, he would cry and wake me up again. One of the most awful things about motherhood, and the one that made me feel so selfish, was the horrifying realization of what carrying an almost nine pound baby had done to my body. You see, I couldn’t really see the underside of my stomach when I was pregnant, so I had no idea what it looked like. Once my son was out of my body, the appearance of my stomach alone made me cry. Funny what having kids does to a woman. Before I had my son I had incredible confidence. After baby, I felt far less confident.
I also felt guilty that I felt that way. I’d had so many friends who could not get pregnant at all. I felt I should be happy I was able to carry that baby, and I was, but I was also entitled to mourn the body I would likely never see again. Fast forward a year, my baby was sleeping through the night. My body wasn’t back where I wanted it, but it was good enough. My husband was still in love with me and I was still in love with him. When my baby started to walk, I started to want to have a baby again. There was just one problem, my periods had never returned to a normal cycle since I’d had my son. I went to see my OB and she ran some tests. Come to find out, I had premature ovarian insufficiency. My doctor sent me to a wellknown, reputable reproductive endocrinologist who delivered the shocking news that I had less than a 2% chance of conception. He said we were not good candidates for IVF or IUI because I didn’t have enough eggs to harvest. I was brokenhearted, but I resolved to be happy with the beautiful child I had and enjoy being married. I was shocked six months later when smells started to bother me. I put off taking a test because I didn’t want to see a negative sign and I was sure this was all in my head. After it persisted and I began to notice some nausea, I broke down and took the test where a bright pink positive sign greeted me. My goal in life at that point was to avoid having a baby with cleft palate. I had read every study on the potential causes of cleft palate during my first pregnancy
and I did everything I could to avoid that problem this time. I had the Panorama done in week 10. Thankfully, it came back that I had a healthy, genetically perfect baby boy. I was ecstatic at having another boy. I’m just a woman who was made to raise sons. It is an identity I have embraced and integrated into who I am. However, I was anxious, as cleft palate does not show up until around week 16. I cried every day for almost six weeks. I reread the statistics showing that while my risk factors were higher than the average mother, they were still not necessarily high. I went to Maternal Fetal Medicine for my high definition ultrasound on the first day of week 17. Tears streamed from my face as the doctor showed me the upper lip and even explained how he could see my baby boy swallowing, showing that he had an intact palate. I felt I was home free! I was so, so happy. Then New Year’s Eve came, I was 26 weeks pregnant and I developed the worst headache I can possibly describe. I was about to take some Tylenol and attempt to sleep it off. Thankfully, my husband is not a moron and he took me to the hospital. Out of nowhere, without a single risk factor and without warning, I had preeclampsia. I did not even know what preeclampsia was when they first told me about it. I knew it had something to do with high blood pressure and protein in your urine, but I had no idea it could cost me my life or that I would be in labor and delivery on the day I turned 27 weeks pregnant. I remember asking my doctor if my baby would live and he told me that
he had a 95% chance of survival, but would have a long stay in the NICU. Having a child in the NICU is a roller coaster of emotions. You are frequently bombarded with information that you may find terrifying even though it is completely normal and age appropriate for a child who is so small. Examples of this include the need for blood transfusions or the presence of a heart murmur. If you are a person who is bothered by sounds, as I can be, the NICU can also be an anxiety trigger because everything in the NICU beeps. It is definitely not a place to try to meditate or center yourself. Interruptions are frequent. As of now, he is still in the NICU, and I am anxiously awaiting his homecoming. In the end, my body isn’t as destroyed as it was when I had my first child and I’m not tired from finishing my third trimester. However, I am more obsessed with breast milk than ever before, and I while I am sleeping at night, I am tired from going to the NICU twice
a day. I’ve learned that when a doctor tells you that every pregnancy is different, he is right. What they don’t tell you well enough is how to prepare for once you bring your baby home. The sleepless nights, the often constant crying, the countless diaper and clothes changes, the dependency on your partner, and the mix of emotions you feel --- helpless, exhausted, sad, loved, and over the moon proud of what you’ve overcome --- all at the same time. It truly is something you just have to experience to fully understand. 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 read more about Paula, visit her website.
5 facts on preeclampsia... *progressive condition that causes elevated blood pressure, swelling and protein in the urine *preeclampsia affects both the mother and the baby *upwards of 8% of pregnancies are affected by preeclamptic conditions *risk factors include multiple birth pregnancies, obesity, a history of high blood pressure and diabetes *the only effective treatment for preeclampsia is delivery *source: The Preeclampsia Foundation
Cooper & Mac, 12
TTTS Survivors (Angel, Bennett)
Paityn & Jordyn, 12 mos. TTTS Survivors
photos courtesy of firewife photography
Ella, 10 Caelie, 10
Henry, 9 Megan & Kacie, 15
IUGR Survivor 38
looking back and moving on... 300
families assisted financially
families assisted via phone and email
awarded in research support and grants at leading medical centers
website impressions per month
social media followers
participants in The Great Candy Run
reaching & supporting
families around the globe! connexions
the great candy run offers the
sweetest finish ever by michelle somers
this kind of event gives people a glimpse of how sweet it is to hold your baby for the first time, when you were told it may never happen. Is there any better way to motivate 2500+ kids to get moving than candy? It turns out, candy and the nostalgia of timeless memorabilia like the Candy Man and Candyland are great motivators for people of all ages. While it has been around for a while and has changed names a few times over the years, The Great Candy Run was created as a fun event to increase awareness and raise funds around fetal syndrome research. Now expanding to its third and fourth city in 2016, it is the largest fundraising and awareness event put on by the Fetal Health Foundation each year. In the three years since its rebranding, the Foundation has hosted more than 16,000 participants across the country! As a 5K that encourages walking, running, and even a competitive Stroller Division for those with little ones, the Great Candy Run is more than just candy. It offers fun for the whole family and provides a good balance between the sweet life and the importance of fitness. The finish line is surrounded by candy, refreshments, finisher medals, music, and so much more to offer a great, memorable experience. There is truly something for everyone! Take
one look around and you’ll see kids and parents coming through the finish line together, parents cheering on kids, and kids cheering on those parents that couldn’t quite keep up! Yet what families learn is that “the sweetest finish ever” goes so much deeper than the smiles and the laughter, the costumes and the candy. At the heart of this event, the Foundation is providing hope and saving babies' lives. With more than 200 babies dying each day due to complications surrounding a fetal syndrome, the Foundation aims to change that. The proceeds of these events directly benefit the Foundation's mission which supports research grants in improving treatment options for a number of those syndromes.
of survival for any fetal syndrome diagnosis is no less than 100%. Finally, "the sweetest finish ever" comes when parents are able to realize their dreams of having a family by holding their precious babies in their arms. The Great Candy Run is hosted in Denver, CO and Jacksonville, FL, and will expand into Seattle and Minneapolis. With the event in new markets, even more families across the country will get to learn about the many families that are affected and how the Foundation offers hope when there seems to be none. Families will make a difference in so many lives and experience "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.
"The sweetest finish ever" comes when fetal syndromes no longer go undiagnosed and untreated. It comes when no parent is told that there is no hope for their unborn child, and when the rate
when it might be time to call the doctor 42
by talitha a. mcguinness
We all know that being pregnant has its ups and downs, and carrying twins or more can certainly take its toll on your body. You read about potential morning sickness in the early months, and you hear about showing earlier and putting on weight faster, but is that feeling of discomfort more than simple “growing pains”? In this time of uncertainty, here are a few ways to tell if it’s time to contact your doctor for an expert opinion. *Bleeding, fever, pain or chills are all signs that something may not be right. However, if you’re spotting lightly in the early months, that is normal for many women during pregnancy. It’s just a sign of a sensitive cervix. If you’re spotting more than a dime size amount and it is accompanied by fever, pain and/or chills, definitely give your doctor a call. Be able to give them your temperature and tell them exactly how you’re feeling, when it started, etc. *Headaches, fainting and dizziness are also not normal during pregnancy. If you have a headache that seems persistant, or if you find yourself feeling dizzy or actually fainting, your doctor will want to see you to monitor you and the babies and be sure everything is okay. Sometimes, moms with multiples will feel dizzy at times (i.e. when triggered by hunger, after standing for long periods of time, when overheating, etc.), so your doctor will encourage you to rest when you can, layer to prevent from overheating and to always keep snacks with you. *Painful urination is a sure sign of a bladder infection, that if not treated properly and in a timely manner, could lead to more complications like pre-term labor. To avoid a potential bladder infection, be sure to stay hydrated, drinking at least 64oz. of fluid (i.e. juice, milk, etc. also count), plus an additional 8oz. for every hour of light activity you do. *Pelvic pressure is to be expected with any pregnancy (and after all, you are growing two babies down there!), but pain associated in that area is not normal. Of course, you should also know the difference between aches and actual pain. If stretching, drinking more fluids and resting do not help alleviate the pain, it’s time to call your doctor and let them know. *Vomiting followed by fever and/or pain is another abnormal sign during pregnancy. This
you are your best advocate and know best when something doesn’t feel right. goes far beyond morning sickness, as pregnant women often feel some type of relief after vomiting. If you are one of the few unlucky women who seem to be sick all day long, let your doctor know. There are prescriptions available that can help you function in your life a bit better and more importantly, will help you keep your food down to help your babies develop and grow. *During pregnancy, your babies depend on your body to be as healthy as possible, and that includes maintaining a normal body temperature. If you begin running a fever, you should alert your doctor. This could be just a sign of your body fighting a virus, but it could be more serious, linking to an infection. Your doctor will likely want to plan a course of action to get you and your babies through. Fever is notably most dangerous during early pregnancy, when it can cause miscarriage. *If you’re in the home stretch of pregnancy, heavy or steady discharge could mean that your bag or bags of water has ruptured. Your doctor will want to assess you to determine the cause of the discharge, as it could lead to immediate delivery and also to possible infection. *If you start to notice considerable swelling, alert your doctor. This often begins happening into your second or third trimester as water retention, but can signify preeclampsia. If left untreated, preeclampsia can be life-threatening and/or causing low birth weight babies, placental abruption, seizures, and stroke. However, if you and your doctor are staying on top of how you feel, there’s no reason to believe you won’t delivery perfectly healthy babies and fully recover. You know your body better than anyone else, so when in doubt, give your doc a call!
photo courtesy of Bree Elle Photography
Ben & Camden, 3 mos. TTTS Survivors
Brooke & Brianna, 10 TTTS Survivors
such as Now I Lay Me Down To Sleep). Also, be sure to reach out to infant/fetal loss and bereavement organizations such as Heart Strings to help you cope.
No one should ever have to go through a fetal syndrome, but they do and will. Understanding and using these tips will help make you the strongest advocate for your baby(ies) and help you understand what you need to do to ensure the best possible outcome.
photo courtesy of firewife photography
photo courtesy of lisa lansard photography
Take care of yourself – This will be a very stressful time, and while there is no way to remove the emotions and anxiety, you need to be sure you are taking good care of yourself. Be sure you are eating nutritious meals, as eating lean sources of protein, healthy fats and complex carbs can help your baby be stronger during the syndrome. Eating well will also help keep you strong under the circumstances. Try to do some “normal” things like going shopping, watching a funny movie, going for walks (assuming you are not on any restrictions), etc.
Cleft Palate Survivor connexions
it's mine to give by tammy smith
I am the mother of twins, but while I'm only able to hold one in my arms, the other I hold tightly in my heart. I have ridden the roller coaster of learning about, dealing with and facing decisions no parent should have to make after they learn they have a fetal syndrome. I know and have experienced the fear a parent faces when being told their baby or babies might not survive. The stress, the struggle, the fear that the whole process brings. I know all too well the pain and struggle a loss, especially the loss of a child creates. Unfortunately, I know a little about the grief of losing a child during pregnancy. I’ve been there with other moms as they go through the same thing, reliving my own story over and over with each of them. I have given those moms a chance to share their story with someone who knows what they are going through, someone who knows the often bittersweet moments each day brings.
The number one thing I’ve learned is there is no right or wrong way to grieve. Each person is unique. Each story is unique and each loss is unique. The grieving process is so different for each person. The only thing I do know is it is a process and I want to share some of the things I’ve learned along the way. I’m not trained in grief counseling, I only know what I’ve learned through my own personal journey and story. First, people don’t know what to say. They want to comfort you and help lessen your pain in some way so they say "things". Sometimes someone might get it right, but often the words are empty and even painful. I had several people say to me “Well at least you still have one.” The worst words in the world. Kind of like telling a war hero “well at least you still have your other leg.” I used to wonder would someone say to a person after they lost their mom “well at least you still have your dad” or something just as ridiculous? These words were often said in hopes of bringing me comfort, but did not bring me any comfort at all. The words often stung, often broke my heart, and sometimes made me want to put people into their place. The important thing to remember is they were only trying to help. Please remember along the way no matter how much someone's words may hurt, they did have the best intentions. They just didn’t know what to say. Secondly, what might even be worse than someone saying something hurtful with the best of intentions is they may say nothing at all. Again people
don't know what to say, so some people will say nothing. This may feel like an insult. Usually, it is just beyond their words so they act like nothing happened. Try not to automatically take offense. They just may think it is better to say nothing than say the wrong thing. Third, we no longer have a socially acceptable grieving process. During the 1800s, there was a mourning period for all deaths that occurred. It was set in writing to explain what was an acceptable time for grieving for every death that might occur. It even had etiquette set for what to wear and when to take guests and how you should act. The set amount of time for grieving the loss of a child was one year. At least back then, you had a time where everyone knew and expected that you were still grieving. You knew what was expected of you and your visitors knew what was expected of them. Now we have no guidelines, nothing in writing, and no sense of how to deal with loss or grief. We plan a memorial or a funeral and then we expect the bereaved to have this service and be “over it.” If only it were that easy, right? There will be people who ask you to or expect you to or want you to be “over it” --- the quicker the better, because they are uncomfortable around you because again, they don't know what to say. They want you to be back to normal so that life can go on. Just so you know, you will never be “over it”. You will just learn to live in a new normal, a life that will be much different than before you learned of losing your unborn child. Your new normal will
help you go on but you will still grieve the loss forever. The one thing I do know --- it does get easier. Fourth, you and your spouse will not necessarily be grieving in the same way or even at the same time, but that doesn’t mean you aren’t both still grieving. Men want to be strong for their wives so they may not express the pain they are going through and they may compartmentalize their loss in ways that you can't fathom. A word of advice for men --- you don’t have to be strong for us, just weep with us. Women, we are the ones who carried the child, whose bodies changed and who felt them move. We tend to be bit closer to them in a very physical way. I think we might feel the loss differently and we often wear our emotions on our sleeves for all to see. We want men to do the same thing. We want them to talk about it. Like everyone else, they may not have the words, so they say nothing and it seems like they are moving on. As women, we can’t comprehend, but we should be gentle with them. The experience of losing a child can make your relationship stronger or it can certainly and understandably tear it apart. Remembering that we all grieve differently can be a start to growing stronger and working through the grief together. Fifth, I know the struggle faced with the simple question of "is he your only one child?" There is the inner struggle of what to say. When my survivor was still an infant it was almost like I was compelled to blurt out my whole story. I wanted desperately to share with
anyone who would listen to our tragic story of losing my other son, his twin. I wanted to make them understand that he really wasn’t my only child and he never would be. Now I tend to just smile and nod. Sometimes I might say something like he is the one I get to raise or something similar. There are moments when it catches me off guard for numerous reasons and I end up looking like or sounding like I don't really know how many children I have. This almost seems worse than just blurting out your whole story because people really don't know what to say. Plus, our story has become more mine, where I've internalized it, cherishing it for myself, if that makes sense. I don't just blurt it out anymore. I don't mind sharing it, but often want to hold it closer to my heart and tend to share in more personal settings. I feel as if you have to earn hearing it before I simply relinquish the pain and intimate details of our personal experience with child loss. Finally, your grief is like a wound. It starts out painful and gaping and bleeding and ugly. It could get infected, which will obviously only make it even worse. Initially, it will still be raised, red or discolored, ugly, and even painful. Over time though, like all wounds, they begin to heal over and it will eventually close and fade. What remains will begin to blend in with the rest of the surrounding tissue and flatten out. The pain will subside. What will still be left behind is a scar. The scar will never go away, it will never disappear completely, no matter how much time passes, and it will forever change you. My son, my survivor, is now
almost eleven and I still have moments that take my breath away. Sometimes it feels like my heart might break into a million pieces. I still have times where something, often some strange thing, will catch me off guard and make me cry or have me struggling to keep it together. It usually happens at the most inopportune times, but I don’t care because I don’t want to ever block it out or forget. I believe we need to work towards healing as grieving parents. I encourage families to hold their babies when they arrive, regardless of how much it hurts to think of the one you're missing. Find ways to honor and celebrate your survivor and your angel. Do it in a way that is personal to you and meaningful for your family. Again, there is no right or wrong way. I personally have found helping others and sharing my story has been healing. I cherish being able to honor and celebrate both of my boys through the Fetal Health Foundation by helping others and creating events to raise awareness. Go out and find ways to heal. That will be the best way to share your grief and the hope that lives on. Tammy and her husband, Joshua, got involved in the Great Candy Run and then the Fetal Health Foundation after their own treacherous pregnancy and the loss of one of their sons to TTTS. Her work the Foundation honors both of their sons. Because of her own experience, Tammy’s passion for helping other couples during their fetal diagnosis ordeals is important to our work.
Ryker & Brecken, 3 TAPS Survivors
Zachary, 10 TTTS Survivor
LUTO Survivor connexions
The Johns Hopkins Center for Fetal Therapy Experience Receiving a diagnosis of a fetal anomaly immediately turns an appointment filled with excitement and anticipation into an experience laden with worry and uncertainty. Many families that enter the Johns Hopkins Center for Fetal Therapy are urgently referred under exactly these circumstances. Our mission is to bring all that medicine has to offer to the unborn child by offering cuttingedge prenatal diagnosis, treatment before birth, a smooth transition to postnatal care and a dedicated research commitment. All necessary services are available and coordinated under one roof at The Johns Hopkins Hospital and the Johns Hopkins Childrenâ&#x20AC;&#x2122;s Center. A devoted team of physicians, nurses, sonographers, social workers, genetic counselors and administrative staff members supports families throughout their journey. This endeavor is highlighted in two select cases. Cutting-Edge Treatment: Fetoscopic Tracheal Occlusion for Congenital Diaphragmatic Hernia Fetoscopic tracheal occlusion (FETO) is the prenatal treatment for severe congenital diaphragmatic hernia. It involves using a small camera called a fetoscope to insert a small balloon into the fetal trachea to occlude the airway. This traps the fluid produced in the lung from escaping, causing the lung to expand and grow. The procedure is performed usually between 26 and 29 weeks gestation. A second procedure is required to remove the balloon after 32 weeks gestation. This treatment may double survival for children with severe congenital diaphragmatic hernia. We are one of a handful of centers in the United States offering FETO for congenital diaphragmatic 50
hernia and among an even smaller group that have successfully completed the procedure. The first patient treated at Johns Hopkins traveled from another state with hope that FETO could improve the chance of survival for her beloved first child, but the journey was fraught with obstacles that seemed insurmountable at times. The entire team at the Center for Fetal Therapy was not only up for the challenge but relentless in overcoming every hurdle. Time was of the essence, and each member of the team was called to action. Our social worker met the family and began identifying all necessary resources that would be required to assist them during their time in Baltimore and at home. The family met the neonatology and pediatric surgery teams and toured the neonatal intensive care unit. The family returned home and remained in close contact over the following weeks while all the behind-the-scenes work happened. The family returned to Baltimore for surgery. Fetoscopic tracheal occlusion was performed without complication. The mother was discharged two days later, and the family stayed at the Believe in Tomorrow Childrenâ&#x20AC;&#x2122;s House adjacent to the hospital. The mother had weekly visits to evaluate the size of the lung and monitor for signs of preterm labor. While the balloon was in place, an entire team was available around the clock in the event an emergency occurred and the balloon required removal. About five weeks later, a second fetoscopy was performed to remove the balloon, and the mother was discharged home. The mother continued weekly visits with the referring provider and returned to Johns Hopkins for elective delivery. After birth, the diaphragmatic hernia was repaired, and the baby had a steady recovery. Remarkably, the lungs were developed
enough that the baby never required a special form of respiratory support called extracorporeal membrane oxygenation, and was ultimately discharged home not requiring supplemental oxygen. Throughout the postpartum and neonatal course, the Center for Fetal Therapy team remained in regular contact with the family and pediatric teams to facilitate a smooth transition. Twin-to-Twin Transfusion Syndrome: Anticipating postnatal care requirements In fetal therapy, perfect outcomes are not guaranteed even when treatment is successful. This can occur after treatment for twin-to-twin transfusion syndrome (TTTS). TTTS occurs in identical twins when uneven volume exchange through vascular anastomoses on their shared placenta leads volume imbalance in the fetuses. In advanced stages, without treatment, most pregnancies end in loss of one or both twins. Fetoscopic laser coagulation of placental vessels aims to close the vascular anastomoses and separate the fetal circulations completely. About 10 percent of TTTS survivors are at risk for developmental delay, regardless of the case characteristics. Detailed ultrasound surveillance after treatment is required to identify changes in the brain that can help predict neurologic damage, but sometimes children may have impairment even if the ultrasound is normal. One family treated at the center underwent an urgent laser procedure for TTTS stage 3. Signs of TTTS resolved rapidly, but imaging of the brain showed progressive ventriculomegaly several weeks after surgery. Head growth also slowed, and the prognosis for neurologic outcome was poor. Fetal MRI was performed, and expert pediatric neuroradiologists and neurologists were able to provide extensive prenatal counseling for the family. A clear management plan was outlined that included direct entry of the neonate into a path for early intervention at the Kennedy Krieger Institute. Formal neurodevelopmental follow-up at the Kennedy Krieger Institute is part of the structured care path available for all patients treated for TTTS
at the Johns Hopkins Center for Fetal Therapy. This allows identification of subtle delays that may benefit from early intervention that would otherwise be missed by routine postnatal care. Superior resources to maximize long-term outcomes are a hallmark of the service provided at Johns Hopkins. Commitment to Research Improving technique and innovative approaches to fetal therapy are central to our operation. Our counterparts among the pediatric subspecialties are also eager partners in the development of condition-specific care paths and their prospective assessment. As a member of the North American Fetal Therapy Network, we participate in collaborative research projects to advance or collective understanding of fetal conditions across centers. Among our many endeavors, we are supported by a grant from the Fetal Hope Foundation to use 3-D printing technology to improve prenatal surgery for spina bifida and participants in the human placental project sponsored by the National Institutes of Health. We believe true progress in fetal therapy can only be achieved through high-quality research. We strive to maintain a comforting atmosphere for families and provide patient-centered services. We provide expert diagnosis and multidisciplinary involvement as required by the condition. This ensures a seamless transition from prenatal planning to postnatal care and includes the necessary support to make familiesâ&#x20AC;&#x2122; journeys a little easier. The entire team is absolutely dedicated to this endeavor, and that is what makes the Johns Hopkins Center for Fetal Therapy a special place. References 1. Deprest J, Gratacos E, Nicolaides KH. Fetoscopic tracheal occlusion (FETO) for severe congenital diaphragmatic hernia: evolution of a technique and preliminary results. Ultrasound Obstet Gynecol 2004;24:121-6. 2. Rossi AC, Vanderbilt D, Chmait RH. Neurodevelopmental outcomes after laser therapy for twin-twin transfusion syndrome: a systematic review and meta-analysis. Obstet Gynecol 2011;118:1145-50.
look cute into your 3rd trimester without breaking the bank I have always considered myself as a fashionable person and take much enjoyment in getting dressed each morning. My job in advertising requires me to be put together and occasionally dress up for events in New York City such as Television Upfronts and Premieres. When I found out I was pregnant, I was excited for the challenge! I started Pinning maternity fashions and following every pregnant fashion blogger on Instragram that I could find. What I soon came to realize though was that dressing the part of fashionable prego didn’t come cheap! My first trip to Destination Maternity was eye-opening, to say the least. You want how much for a cotton wrap dress?!? Below I share tricks I picked up over the last 8 months of my twin pregnancy. It is possible to stay fashionable and look pulled together without breaking the bank!
lets talk jeans
I work in a casual & creative work environment, so a good pair of jeans is a must. At 14 weeks (when I could no longer button my pants!), I took the plunge and bought a pair of maternity jeans from Destination Maternity. I have literally worn these jeans through over the last 8 months. Yes, they were expensive (Paige Denim was the only designer brand that fit my 5 foot 10 frame), but all you need is one nice pair to get you through your pregnancy.
shop for staples My maternity wardrobe is full of very basic pieces
that can be worn with everything. Items such as black t-shirts and white tank tops, purchased from Gap Maternity and/or Old Navy Maternity will be your best friends. Pair these staples with your jeans, a classy, but comfy pair of shoes and an open cardigan, (exposing that cute bump), and you’re good to go!
by kate nissen moncayo
accessori ze Although your belly may be growing (and
growing!), you can still look fashionable by throwing on a few cute accessories. I am a huge fan of statement necklaces and was able to pick up a few cheap ones from J Crew Factory. I also bought some fun, new sunglasses from Old Navy that made me feel good, even if paired with a simple white t-shirt and jeans.
check out target’s maternity section I’ve never been a huge fan of Target clothing,
but their Maternity selection is great, especially the Liz Lange for Target line. I purchased a few cotton maternity dresses that got me through warm summer days. Once it turns cooler, pair your dress with a statement necklace and a denim jacket and you are instantly one of the more fashionable people in your office!
siI wanted ze up something special to wear to my baby
shower, but couldn’t stomach spending close to $100 on something I’d never wear again. Instead, I found a cute Guess wrap dress on sale at Lord and Taylor (non maternity) and simply sized up 2 sizes. I am excited to repurpose my shower dress for a friend’s wedding this fall, and the larger size will be perfect while I’m still shedding those last few pesky baby pounds.
Kate Nissen Moncayo is an Infertility survivor currently expecting her first children via IVF (Boy/Girl Twins!). She is an advertising executive in the NY/CT area, trying to balance a multiple birth pregnancy and everyday life. As she anxiously awaits the arrival of her twins, sheâ&#x20AC;&#x2122;s reading all the twin tips & tricks she can!
maternity fashion photos: Clockwise from top, Old Navy Polka Dot Blouse, Pencil Skirt & Denim Jacket, Liz Lange for Target Navy Dress, Liz Lange for Target Maternity Striped Dress, Paige Maternity Jeans, Old Navy Aviator Sunglasses, Steve Madden Sneakers, Taupe Bucket Hat, JCrew Factory Necklace, Gap Maternity Black T-Shirt
by tara chartrand
As soon as I heard the words "Twins!", I looked at my husband. He was pale, eyes forward, with a straight face. I grabbed his hand and began to giggle (more at him than at the thought of having twins)! We were given a printout of two little babies with strong heartbeats and were told we were having identical twins. She was clear in communicating the risk of TTTS and confirmed there would be ultrasounds every two weeks to monitor the babies. We left the office in a euphoric state of mind! Not much later, the realization of twins began to sink in. I had been lying uncomfortably for over 3 hours at our 21 week anatomy scan. After what seemed like an eternity, the doctor began educating us on signs of TTTS and proceeded to explain that we would need to head to Toronto for laser ablation surgery that night. Our biggest fear had become a reality. The next day we were diagnosed with stage 3 TTTS. At this point, it really didn’t matter what the statistics said because neither of our blessings would survive without immediate intervention. My husband and I had a very positive outlook on things, but the ‘what ifs’ were lingering. What if my water broke during surgery? What if I had placental abruption and went into labor? What if
photo courtesy of lisa lansard photography
live among us...
we lost both babies? We needed names! Twin A had a grave chance of survival so we named him Makale; he would be our “gift from God”. Twin B, Lukas, gave us hope and he was our “shining light”. Besides having more vessels than they had ever seen on a 21 week placenta, our two hour surgery went seamlessly. After 24 hours, the first ultrasound revealed two heartbeats! We were told this is all we could ask for at this point in time; it was very good news. Another 48 hours later, the ultrasound portrayed a small bladder. Things were going to be okay. Three weeks later, the signs reappeared, but reversed! This time seemed easier and the final consensus was clear. We were back at stage 3 TTTS because one of the large vessels reopened. Besides a mishap of a punctured membrane, which meant our babies now shared the same sac, it felt like another successful trip to Toronto. A few weeks later at our 26th week ultrasound, Lukas was fighting for his life. His doppler showed reverse blood flow through the umbilical cord. He hadn’t gained weight, had a small bladder, and not very much blood was being pumped through his heart. This time, surgery wasn’t an option; we were helpless.
I was told to carry on, continue with my days as I had been – tend to my two year old son, make simple meals, throw in a load of laundry, slowly organize baby gear and wait. I was rushed to the hospital via ambulance at 4am on February 16th. Lukas’ umbilical cord was wrapped around Makale’s leg, which caused his heartrate to dip several times within the next few hours. In this business, there are no second chances; Makale Gregory and Lukas Paul were born at 26 weeks, 4 days.
Our first trip to the NICU was daunting. Makale was tiny, weighing in at 1lb 13oz. We made our way over to see our little Luke and as I peered at him through the plexiglass, at 1lb 4oz, his name was so fitting. I stuck my hand through one of the portals and he squeezed my finger. This feisty miracle held on to meet his mama! Day after day, we spent time with the twins. We quickly got used to the wires, bells and whistles, and friendly nurses constantly on stand-by. Yet every day in the NICU was a battle for little Luke. Within the first week, he was put on a ventilator, then had a hole in the lung, had a lung bleed, then had air around the heart in the lungs. On day 6, he was diagnosed with a grade 3 brain bleed, and a possible perforation of the bowel. Shortly after, he had a new lung bleed and abdomen discoloration. Lukas was very sick and may not be able to sustain another hit. It was undefinably difficult to tell the world that my precious Lukas gained his angel wings. I shared how we took pictures with the twins and held him in our arms until he went to sleep just before 11am on March 3rd. We were so thankful for those few hours without the wires and beeps of monitors. We rocked him, sang to him and whispered sweet
nothings in his tiny little ears. Little Luke and God made the decision we were dreading. Lukas became Makale’s guardian angel and was at peace. My greatest blessing is that I got to meet both of my babes and I AM the mommy of twins.
As the days passed, I became an expert at taking Makale's temperature, changing diapers, doing oral mouth care, massaging lotion onto his flaky skin, and measuring his belly circumference. I knew what time the next dose of medicine was to be given and what it was for. I was able to comfort him by holding his head in my hand as routine procedures were carried out. While he was resting, I would sit beside his isolette and read to him through the porthole.
On Good Friday, it all changed. I got to hold my baby. It took three nurses to coordinate the tubes and wires, making sure we were comfortable and safe. I embraced Makale against my chest and his vitals were more stable than ever. From that day forward, it was important to hold him. We enjoyed the Kangaroo Care for over 3 hours that day, and every day following. As a parent of a NICU baby, I often felt powerless. There were no straight answers. No x-ray or ultrasound could determine whether the bowel was actually perforated. On April 10th, the doctor described Makale’s progress as “cautiously optimistic”. Although his body was still swollen and his belly was internally inflamed, he was taken off antibiotics, as they believed his infection was gone. His platelet count held steady for 36 hours and we were waiting to see if he would make more on his own. He had been through over 30 transfusions in the past month. It was time to wean his pain killer and begin entry feeds.
Four days later, Makale’s belly burst like a volcano. Blood, puss and stool oozed out of a weak spot in his skin. If his gut would have ruptured on the inside, we would have lost him. The next day, the surgeon carefully removed his intestines and checked millimeter by millimeter for damaged bowel. He needed about 10cm of small intestine removed. They created a stoma, which means his intestines were attached to the outside of his body and he would use a bag for waste collection. There were plans of reconnection surgery in the future, but for now, Makale had many other challenges to face before we would be changing dirty diapers. The days that followed were filled with healing, learning to suck, swallow and breathe, multiple ostomy bag changes, skin-to-skin and breast feeding. As his mama, I was willing to learn everything so I could take him home as soon as possible. I was crushed when the doctor finally explained that an imbalance in Makale’s electrolytes could cause brain damage, so he was closely monitored until after his reconnection surgery. Makale’s intestines were rejoined on June 24th, with three hernias fixed, tummy tuck completed and a belly button created. He conquered NEC, ROP stage 3 with the plus disease, jaundice, IVH grade 1-2, and multiple infections. He learned how to breathe on his own, eat from a bottle and breastfeed. After 141 days in the NICU, on July 7th, we were ecstatic to change our first dirty diaper in his nursery, the nursery that now displays Winnie the Pooh's quote, “If there ever comes a day when we can’t be together, keep me in your heart, I will stay there forever”.
the low down on
the baby blues & signs every mom should know
by kinan copen
t’s not breaking news that the trifecta of pregnancy, childbirth, and breastfeeding can unleash a torrent of hormonal changes that basically render you as messy as the drug-addled guy you avoid outside the grocery store. You’re sad, you’re happy, you’re furious, you’re crying --- and that’s just the first five minutes of your day. But what about when those unbalanced feelings don’t go away? Post Partum Depression, or PPD, is an umbrella term that covers a spectrum of mood disorders from depression to anxiety to obsessive/compulsive symptoms that can appear any time in the first year after your bundles of joy have arrived. While you yourself may not have experienced it, PPD may be more common than you think. In the United States, it’s reported that 15-20% of new moms experience some form of PPD (that’s about 1 million women each year). Of course, this statistic only reflects the diagnosed cases. Many medical professionals believe the numbers are actually much higher, but that new mothers experiencing symptoms of PPD often try to shoulder it on their own rather than seek help, perhaps ashamed they aren’t feeling that incredible joy they had expected while they were expecting. The case is even stronger for us moms of multiples, who quickly have to adapt to shouldering double (or triple or quadruple!) the newborn load. It’s to be expected that we might be more tired, more anxious, more over-all “freaked out” than our singleton mom compatriots, so we try to explain away
our symptoms as part of the job. We tell ourselves we’re strong, we can “handle it,” but this stoicism can be to our own detriment. At least it was mine. Despite an easy pregnancy and going full term with my identical twin boys, I exhibited symptoms of pre-eclampsia after my c-section which meant I wasn’t able to be with my babies right away. Those five hours seemed like eternity as I stared at the blood pressure monitor, willing those numbers to go down, body shaking as the drugs left my body. All I could think was that they hadn’t even been in this world a day, and I’d already let my sons down. After I recovered and we were home from the hospital, I was haunted by recurring thoughts that there was no way I could protect these wonderful, fragile creatures --- that I simply wasn’t up to the task. A common symptom of PPD is having trouble bonding with your newborn and I suppose this was my version of that. I was so busy worrying I couldn’t protect them, it was hard for me to truly enjoy being with them. My love for them was large and overwhelming. Instead of feeling good, it felt terrifying. Everyone was always telling me “sleep while the babies sleep,” but instead I would sit with eyes glued to the monitor convinced if I didn’t watch them, one, if not both, of my babies would die. In
my mind, they were too perfect and I didn’t deserve them. I became obsessed by the various awful fates that could befall us at any given moment in time. My new little family suddenly felt so vulnerable. These unceasing negative thoughts began to cause me a ton of anxiety, another symptom of PPD. Obviously, being unable to stop thinking about your newborn babies dying is not the best way to experience the joys of the miracle of life. Something bad was going to happen; I was sure of it. Despite all this, I still didn’t think anything was wrong with me. Thanks to having two best friends who are therapists, I was pretty clear on the symptoms of PPD from the time I got that plus sign on my pregnancy test, but that didn’t stop me from making excuses for how I was feeling. I told myself, “This is me. I’m a stress case.; an adrenaline junkie who is used to going at 110%, even when the gas tank is at zero. There were many times in my life I felt like was drowning --- why should this be different? Instead of seeking help, I tried to “normalize” the situation. I cleaned the house obsessively. I kept the boys and I on a strict routine. I made sure to take a shower and put on make-up every single day, as though as long as the house was in order and we were all dressed, everything would be okay. Makes perfect sense, right? I got a lot of, “I don’t know how you do it” and “you have it so together,” but I was living a lie. Although it must have seemed like I was on top of things on the outside, on the inside was a completely different story. On
the inside, I sat quiet in my panic, until it finally broke open and spilled out everywhere like a dam unexpectedly opening. One day, our dog accidentally took a wrong wiggle off of our bed. He wasn’t hurt, only startled, but at the sound of his small doggy yelp, I started sobbing. Even once it was clear he was fine and back to his crazy terrier self, my tears were unstoppable. I rationalized that here was proof of how unqualified I was to be a mother. I couldn’t even keep my dog safe! How could I possibly be responsible for my babies' safety and wellbeing? My husband (and hero of this story!) held me close and told me gently that I didn’t seem like
...instead I would sit with eyes glued to the monitor convinced if I didn’t watch them, one, if not both, of my babies would die. My new little family suddenly felt so vulnerable.
myself. I knew he was right. Sure, becoming a mom can be a tough transition, but it shouldn’t have to be so miserable. We made an appointment with a wonderful therapist who specializes in PPD. Within a few weeks, I was on a low dosage of an antidepressant and soon was able to function better and better each day. It was that easy! Before I knew it, I was calm and patient again. For the first time I felt like all those people were right; I was handling becoming a parent pretty well. After seeking help, my mood went from “I’m drowning in this,” to “Hey, I’ve got this,” and that felt really good. My confidence in myself as a mom grew while all the fear, sadness and panic faded to the background. This made all the difference in how I was able to relate to my new babies and become the mom I always wanted to be; present, involved, and loving, rather than anxious and overwhelmed. My boys are now much older, living proof we all survived that harrowing first year. I’m no longer on the medication, although I reserve the right to call in my support system of friends, family and pharmaceuticals if I need some extra help again. Thanks to them, I was able to make it through the toughest transition of my life: becoming a mom. Kinan Copen is a screenwriter and journalist living in Venice Beach, CA who writes for screens large and small, and has freelanced for ESPN: The Magazine and various online publications. She’s the mom of identical twin boys as well as a ferocious terrier-dachshund. You can follow her on facebook or twitter.
When you find out you’re having twins, the rules change. Heck, it’s safe to say the game changes. It really takes your breath away and makes you reexamine everything you thought was true about the life of a future parent.
what to expect when the twins arrive by mike crider
So, many crazy things happen to you when you have twins. It’s truly remarkable to think that people go out of their way to give you special treatment, and you’ll be baffled by the fascination (and the ignorance) that people have when staring at two (or more) children that share the same birthday. My experience motivates me to offer some tips because they are important pieces of advice. Some are funny, some not so much, but many will make life just a little easier for parents expecting twins. I don’t hold these truths to be self-evident (if you don’t know your history, Thomas Jefferson started the Declaration of Independence that way…not like you care), but I do feel as though they will be helpful. To be fair, this list mostly pertains to twins under the age of one. Mine are over two-and-a-half now, so don’t ask me for advice on toddlers yet. Without further ado… 1. You will likely keep the kids on the same schedule as much as possible. 2. You will not let the schedule dictate your life…your twins are still individuals. 3. You will NOT wake a sleeping baby unless you are feeding at night…do this very quietly. 4. As much as possible, you will not refer to your children as “the twins”. 5. When in doubt, feed the babies. 6. You will accept help from anyone you trust. You can pretend to do it all by yourself, but when you have hit the bottom, you will ask, and gladly accept. 7. You will accept diapers/gifts from anyone and everyone. They will buy you more because you’re having two babies, and you will store it away and find a way to use it or apply it to something you need. 8. You will not be picky when choosing colors of strollers and high-chairs. 9. You will not feel guilt when you have to miss work; your kids will be sick often the first couple of years and few understand the plight of a twin parent. 10. You will have Goldfish or Cheerios with you AT ALL TIMES. 11. You will always have at least four diapers in the bag AT ALL TIMES. 12. When alone with your twins, any place makes a good changing table.
13. You will have a supply of Tylenol at home and in the bag AT ALL TIMES.
28. You will have good luck at consignment stores, both when buying and selling clothes.
14. You will not care about the brand of diapers when you reach for one in a time of need.
29. You will connect with other parents of multiples, because they are the only ones who really know what it’s like.
15. You will accept checks from formula companies to receive discounts, and you will wait at the register until the cashier rings it up properly.
30. You'll need a car that can handle two car seats at once. Your Mustang is nice, but it won't work.
16. You can use boppy pillows for feeding, at times. If you’re alone, and they get hungry, you’ll understand everything I’m saying.
31. You will hate bath time, then you will love it. Then you will hate it again, but the twins will love it. Get used to this love/hate relationship.
17. You will sing James Taylor songs to rock them to sleep (what were you going to sing, Ke$ha?).
32. You will not eat the puffs that are for babies. They are gross, but your twins will like them a lot.
18. You will face tantrums during toddlerhood, and you will want a strategy for those difficult days (on weekends, a 45-minute drive does wonders).
33. You will have weird dreams; it comes with the lack of sleep and heightened awareness.
19. You will not, under any circumstances, underestimate the value of Goldfish. 20. You will not feel shame hauling a wagon through a shopping mall, a food truck rodeo, or a farm.
21. You will buy a thermometer that takes temperature by reading it through the temple. Unless, of course, you insist on doing it other ways…good luck with that. 22. You will dress your twins alike regardless of how different they may look, that is, until they start school. Or if they are boy/girl (obviously). 23. If you have boy/girl twins and someone at Walmart (because that’s always where it happens) asks you if they are identical, you will remember they know nothing about twins and tell them they are different in one very important way. 24. You will keep their birth “tags” on for at least a week because, well, who wants to mix up babies? 25. You will love bouncy seats. That is all. 26. You will realize that Babies ‘R Us has cool stuff, and they know they do, and that’s why it costs so much. You will learn that Target carries things cheaper and with better shopping carts. 27. When at a restaurant, you will feed the children first. When they are toddlers, you will not be at a restaurant.
34. You will own a calming noise machine. This will last much longer than you anticipate and don’t feel guilty if you must borrow it for yourself from time to time. 35. You will not forget your significant other. There’s a reason you “ended up” with twins. 36. You will hear others tell you to “sleep when the babies sleep”. You will then laugh at them, because it’s not that easy. 37. You will celebrate joyously when they turn one and the doctor tells you to switch to cow’s milk. 38. You will buy lots of milk (see #37). 39. You will read to them, even when they appear not to be listening; they will surprise you one day. 40. You will laugh at teething toys, teething necklaces, teething tablets, etc. --- until they start teething. 41. You will find yourself angry, frustrated, tired, irritated, annoyed, frazzled, clueless, and sometimes feeling hopeless. This will pass, and your babies will get older. They will share a bond that they will take with them throughout the rest of their lives. And you...you will be a hero. You were, and are, the parent of twins. They won’t be this size or in this stage for very long. Life with twins is constantly evolving and changing from one stage to another. Trust me, I’ve been there. Mike is a school administrator and a father of twin girls. He writes about his family’s adventures at his blog Twin Dad Talks. He’s also published an e-book though Amazon called Twin Dad Talks: Help for First Time Fathers Navigating Pregnancy. You can find him on facebook and twitter.
New Frontiers in Hope Just five years old, the Colorado Fetal Care Center has achieved some of the world’s best outcomes and is conducting some of the most promising research into fetal abnormalities. When you’re told your unborn baby is in trouble, the most comforting words you can hear are: “We have seen this before and know what to do.” Those were the words Timothy Crombleholme, MD, director of the Colorado Fetal Care Center, said to Katie Cambruzzi when she learned at 25 weeks pregnant that her twins had been diagnosed with Twin-toTwin Transfusion Syndrome. TTTS, as it is commonly known, is a condition when the blood vessels of a placenta shared by identical twins are connected, leaving one twin without adequate blood supply and the other twin with too much. This condition is usually fatal, if left untreated. “To highly emotional expectant parents, there was nothing better than to hear Dr. Crombleholme’s words,” Cambruzzi said. Thankfully, Dr. Crombleholme and his colleagues are able to offer those words of comfort to hundreds of expectant parents
every year--parents who have just been told that their unborn babies have TTTS, spina bifida, congenital diaphragmatic hernia or one of dozens of other conditions that risk their survival and potentially their health throughout their lives. “There is nothing more distressful than going to your 16-week ultrasound and being told something’s wrong with your baby,” says Ken Liechty, MD, a fetal and pediatric surgeon and co-director of the Colorado Fetal Care Center. “It helps when you can be referred immediately to a place where you can get a definitive answer and intervention.” Faster, Closer Fetal Care Opened just five years ago, but with a team who has decades of nationally renowned experience, the Colorado Fetal Care Center expects to have over 1,500 visits this year. It is one of just five comprehensive fetal care centers in the country, and the only one of its kind between Cincinnati and San Francisco, north of Texas.
When Dr. Liechty uses the word “immediately” to describe how quickly patients can get care, he is not talking weeks or days, but sometimes just hours. “We can get a call on a Friday afternoon from a referring provider and we will fly the mom in that night and do the work-up the next day and, if necessary, the procedure that weekend,” says Mary Beth Martin, executive director of the Colorado Institute for Maternal and Fetal Health (CIMFH). The Colorado Fetal Care Center is part of CIMFH and is located on the Anschutz Medical Campus, just a few miles from Denver International Airport. The Colorado Fetal Care Center, which provides care for all fetal abnormalities, offers a unique and much-welcomed process for worried parents who can gets answers in just one day. All diagnostic testing is scheduled for the morning, followed by a care conference with all of the specialists who will be involved in the care who then meet with the parents to help them make a decision. The findings, as well as, the chosen treatment course are then communicated back to the mother’s obstetrician or maternal fetal medicine provider. “We give the patient every possible
opportunity to make the decision based on our assessment,” Martin says. “We say ‘Here are the risks and the outcomes,’ then we allow the patient to make the decision.” The team’s goal, if possible, is to provide treatment that allows the mother to return home to deliver. In less than five years, the Colorado Fetal Care Center has received national acclaim. The Center stands apart for several reasons:
•Leading translational research (see sidebar)
testing, diagnosis and treatment conferences—available seven days a week Improving Outcomes The Colorado Fetal Care Center has achieved outcomes well above national averages for a number of fetal abnormalities. Among these:
Hernia (CDH): About 1 in every 2,500 babies develops CDH, a condition in which the barrier between the abdomen and the chest cavity is not formed, resulting in abdominal organs moving up and preventing development of the lungs. The Colorado Fetal Care Center has achieved an 84 percent survival rate for these patients over the past five years, the highest CDH survival rate in the country.
•In utero myelomeningocele
(MMC) repair: MMC is a form of spina bifida where the spinal canal fails to close. Nearly every baby born with this condition
will require shunts in their brains to help reduce cerebral fluid build-up. A trial, called MOMS, found that performing in utero surgery to patch the spinal exposure reduced the need for shunts by about onethird. The Colorado Fetal Care Center, which uses 3D printing to prefabricate custom patches to decrease surgery time, has reduced the need for shunts below national averages. In addition, the Center uses a unique approach to anesthesia that has dramatically reduced fetal cardiac complications. Using this approach, the Colorado Fetal Care Center has decreased moderate-to-severe ventricular dysfunction to 1.5 percent compared with 40 percent in the MOMS trial.
Syndrome (TTTS): Between 2013 and 2015, the Colorado Fetal Care Center performed 200 TTTS cases and achieved a 97 percent survival rate for one or both twins—a success rate that is thought to be the highest in the world. TTTS is treated by using a laser in utero to close off any shared blood vessels. Dr. Crombleholme, a pioneer in TTTS surgery, performs this procedure in about 2.5 minutes, which dramatically improves survival rates. In addition, the Center pioneered use of nifedipine, a drug typically used to treat high blood pressure and chest pain in adults, to treat TTTS-associated cardiomyopathy and improve recipient twin survival.
Advancing Fetal Care Now and in the Future CFCC is currently leading or participating in 19 clinical trials and basic research projects, including:
•In utero myelomeningocele (MMC) repair for women whose body mass index is 35-40. CFCC is currently the only center able to offer this procedure to women with a BMI above 35. •Congenital Diaphragmatic
Hernia (CDH): CFCC is currently one of two centers in the country that has received governmental approval to perform FETO, a procedure in which a balloon is placed to close the opening but removed before delivery. It is expected that this procedure will increase survival rates even further.
•Long QT Syndrome: CFCC is conducting a clinical trial to identify long QT syndrome before birth, which could help prevent stillbirths, SIDS, and childhood deaths related to this heart rhythm disorder.
•Interuterine growth restriction: CFCC is conducting basic (lab) research into targeted therapeutics to counter IUGR. In addition to improving health at birth, improving fetal growth could decrease the risk of obesity, diabetes, and high blood pressure later in life.
•Fetal tissue regeneration: A CFCC research team is investigating how fetal tissue can regenerate without scarring after small wounds. Similarly, a fetal heart can regenerate after a heart attack and return to normal. If this mechanism could be understood better, it could lead to improvements in adult hearts after heart attacks. connexions
nutrition & exercise
for breastfeeding moms by tamara duker freuman
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.
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!
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.
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
Stay hydrated. Breastfeeding
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!
Virtually all of the food safety restrictions from pregnancy are relaxed during lactation: favorites like
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.
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-theclock 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 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 well-established. 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! 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.
help babies sleep: duplicate the feeling of being in the womb by hindi zeidman Do you ever wonder why babies love being swaddled? The technique of swaddling is a timeless practice that has been used throughout the ages. Swaddling your newborns, or wrapping your babies snuggly in a blanket, can help them feel safe and secure in the early weeks after birth. Chances are your nurse will do this in the hospital after your twins’ birth and many parents even take a class before their babies are born to learn the swaddling technique. Babies like the feeling of swaddling because it reminds them of being in the womb. It gives them security and warmth. If your babies squirm and cry when they are being swaddled, it means they’d rather have their arms and legs free. If this happens, just try wrapping them more loosely in the blanket. Once your babies can roll over, they should no longer be swaddled, as it restricts movement and will not allow them to safely lie on their tummy or return to their back.
Naturally, there are many benefits to swaddling. Here are just a few: • Helps infants sleep longer and reduces spontaneous arousal • Helps to keep infants in the supine position • Soothes pain and reduces crying among irritable infants • Reduces the risk of SIDS (Sudden Infant Death Syndrome) • Preterm infants show improved neuromuscular development, less physiological distress, better motor organization and more self-regulatory ability To make sure your baby gets the most benefits out of swaddling, here’s what to look for in a swaddle: • The fabric or material should have some give to reduce the risk of hip dysplasia • It should also have moisture wicking properties to keep baby dry and comfortable • It should have an opening to easily change baby’s diaper • It should have the flexibility to be used snuggly or loosely as different babies have different needs Happy Swaddling! Hindi Zeidman is the founder of Ollie Swaddle, the cozy swaddling solution designed to decrease fussiness, assist in self-calming, and ultimately improve baby’s quality and duration of sleep. As a parenting and baby expert, Hindi helps moms and dads navigate the ups and downs of parenting. She covers topics ranging from the best ways to swaddle, how to soothe and calm your baby, best bedtime routines for baby, and more. To learn more, visit The Ollie World.
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