Connexions Spring 2019

conneXions www.fetalhealthfoundation.org

linking the medical & personal worlds

eli's story:

finding a miracle babyproofing:

it's never too early to start surviving sleep

[or a lack thereof]

better bedside manner home away from home:

tips for keeping it together 1

connexions

spring 2019

of fetal syndromatic issues

Delivering the best care when it matters the most Partnership is not a term we take lightly when referring to you and your baby’s unique needs. That’s why our experts work together to provide world-class care.

With specialists in maternal-fetal medicine, advancements in fetal surgery, and a renowned research program providing new hope for expecting parents, you’ll always have a close partner in your pregnancy journey at the UC Davis Health Fetal Care and Treatment Center.

Learn more about our services and how our expertise can support your growing family.

Proud to be: ■

The region’s ONLY level IV Neonatal Intensive Care Unit

■

The West Coast’s first level I Children’s Surgery Center, verified by the American College of Surgeons (ACS)

■

Home to inland Northern California’s only fetal and pediatric heart center

■

Nationally ranked in 5 pediatric specialties by U.S. News & World Report

For more information: 916-794-BABY FCTC@ucdavis.edu

Fetal Care and Treatment Center

fetalcare.ucdavis.edu

a look at the inside...

6

ptsd + the nicu: when the feelings linger

8

special feature: curing spina bifida at uc davis fetal care + treatment center

12

babyproofing and why it's never too early to start

13

spotlight on 2018 research grant recipient: dr. sparks ignites hope at ucsf

16

three things I would tell my pre-kid self

19

exercise + adhd: it's a no-brainer!

22

special feature: that mama bear thing --ava's cdh diagnosis after birth

27 30

yo baby! finding yoga during pregnancy fertility + fate: when three became two

34

special feature: extraordinary care meets extraordinary results in the lone star state

38

home away from home: tips for keeping it together during a hospital stay

40

surviving sleep: daylight savings time tips for new parents

42

special feature: children's hospital wisconsin on genetic testing

51

sawyer strong: proof they are stronger than their stories

54

special feature: expert care at cincinnati fetal center

58

special feature: kicking the odds at medical city children's hospital fetal care center

60

eli's story: finding a miracle at the end of a luto diagnosis

63

better bedside manner: offering keepsakes after a loss

66

special feature: rocky mountain hospital for children: expert care for complex congenital diagnoses

71

19

8

preeclampsia + how it snuck in

40 51

cover photo courtesy of Lauren Winslow Photography

63 connexions

3

letter from the editor...

As parents, we know all too well the importance of milestones and we certainly place a lot of emphasis on them when our children are little. Milestones are a natural part of the passing of time in life. It may be a birth or birthday, learning of pregnancy, your little one taking those first steps, hearing those first words, starting school for the first time, driving, graduating from school, getting a new job or even accepting a promotion, but one thing all of these moments have in common is that they are part of our everyday lives. They are part of the little celebrations we prioritize and cherish.

In the realm of fetal health, unfortunately, we know that so many families never experience some of these things because they are never able to bring their babies home after delivery. They may have received a diagnosis and treatment wasn't successful, or they may have received the diagnosis weeks too late. Regardless, it is heartbreaking as they struggle through the loss of a life they had planned to fit within their future.

It was in one of those exact moments over 14 years ago when a fetal specialist introduced my husband and I to TTTS, and offered termination as an easy option for my twin pregnancy. Thankfully, after a lot of prayer, research and support, we were able to travel for fetal surgery to give both babies a fighting chance. Today, my girls are still fighting and thriving, soon to turn 14 and about to embark on high school (*blink...time flies). On days when their futures were unknown, I know we are blessed to see how bright their futures now are.

Even after working with the Foundation for over 13 years, I'm still amazed and humbled by the impact we are able to have on families.

So much goes into making this Foundation exist, from the supporters in various forms, the researchers and centers finding and providing treatments, to the patients we educate and assist, and especially the babies' lives we are able to help save.

I ask you to continue on this journey with us, share it with others, and help us fight even harder to be a source of HOPE during a very dark time for so many.

4

connexions

Contributors: paula yost schupp jill marcum kimberly zegil emily hyde natasha d'anna marjorie wrenn donald basel, md mikenzie oldham talitha mcguinness heather mariano dr. rebecca kempton lorri sisemore

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

You can follow the Foundation through monthly newsletters, on our blog, and social media.

cristiana caudill 7/1/2018 abs

miley 10/20/2016 ttts

emily 6/28/2017 hlhs jace niland 12/14/2017 luto

alex -trap

kallie beth palmer 7/29/2006 ttts

charlotte ttts + abs

in honor of all the babies gone too soon.

quinn - ttts

fetalhealthfoundation.org

ptsd and the nicu: when the feelings linger by jill marcum

A

After 100 days in the NICU with our twin boys it was no surprise that I developed some general anxiety. As the years passed, thankfully, the anxiety lessened. I had no issues going into the hospital for routine visits; I even volunteered with other "NICU veteran moms" to provide meals for parents who were currently in the NICU. A couple of years ago I even had a very close friend who needed support in the NICU with relatively minor issues with her baby, and I had no problem being there for her. I felt that each of these visits helped me in my healing process. I felt like my NICU days were "all behind me". I had moved forward and now it was just part of my story, a part of my past.

Until one day it wasn't...it was part of my present once again. No, I didn't end up with another child in the NICU, but after years from this journey, I was completely blindsided with Post Traumatic Stress Disorder (PTSD).

It just so happened to be the week of my twin boys' ninth birthday, so some of the bittersweet feelings of that time in our life were already in mind, but they were just distant memories. I received an unexpected phone call that a dear

6

connexions

friend of mine had complications at birth which resulted in her baby boy fighting for his life in the NICU, the very same NICU my boys had been in nine years prior. All of those feelings and emotions that had been placed in their safe little box of memories was ripped wide open. Every horrible feeling of fear, anxiety, despair, and anger came flooding back all at once, as a sucker punch to the gut. Emotional scars I thought long healed were bleeding again, as I hurt for my friend and for my own experiences.

I was suddenly paralyzed by PTSD. I was suddenly transported back nine years to my NICU trauma. For any parent who has been fortunate enough to not require a NICU stay of any duration, it may seem unfathomable to be affected in this manner.

In the days and weeks that followed, I tried to make sense of these intense feelings. I cried multiple times a day, along with experiencing sudden bouts of shortness of breath. For a couple of weeks, I was barely able to function with my daily routine. The littlest things could trigger an overwhelming fight or flight response. Noises like the beeps at the grocery store checkout, the smell of hospital soap, or my phone ringing (fearful someone is calling with more bad news) were enough to set me on edge.

My senses were so hyperactive that someone simply walking up behind me, or touching me could make my anxiety rise.

My appetite and enjoyment of food vanished. I had little desire to participate in things that once brought me joy. My sleep began to suffer greatly, with alternating insomnia and oversleeping, along with erratic dreams. For a short while, I had this feeling of not wanting my boys to even be out of my sight or care. On some occasions, I had anxiety about driving. Being intimate with my husband most times seemed too big of a task or would make me cry and I did not understand why. After doing a little research on PTSD symptoms, I found most of these to be common side effects, but this realization didn't lessen the blow.

As the weeks and months progressed, I felt the ebb and flow of PTSD. Some days I felt normal; some days I did not. It got to the point that I "looked okay", but inside, I felt an emptiness that couldn't be explained. Eventually, thoughts arose that were not mine, nor healthy, as ways to make the pain go away. It was at that point I knew it was time to seek help.

I enlisted the help of trusted friends, my doctor and a therapist. They have all been so supportive in helping me regain some clarity so that I can process this reemergence

of emotions and move forward.

I know I will still have ups and downs, but now I know I am not alone, and I know I CAN survive this, just as I survived our time in the NICU and survived all the other curveballs parenthood has thrown at me. I want others to know that they are not alone and you can survive this, too.

Below are a few practical things that have helped me with PTSD: • Know your enemy; research PTSD. Validating my symptoms helped me realize I was not alone. PTSD is a normal response to a not-so-normal trauma, such as an extensive NICU stay.

• Having others pray with me. I am a very spiritual person, but it took me several days to even pray again and had difficulty expressing myself in that capacity for a few weeks. Don't neglect the supports that have helped you in the past.

• Eat! A person cannot function and heal without fuel. I asked a friend to check in with me to make sure I am eating.

• Know your limitations! I wanted to be there for my friend who was currently in the NICU, but I knew I had to be reasonable with myself about how much I could and could not be involved. I set boundaries and gave myself space from the situation by not checking in every day, but helping in some other practical

ways. Also, give yourself the slack needed in your daily duties; it is okay to order out or ask someone else to handle the dishes for you, or handle the kids at bedtime.

• Communicate with your larger support system, spouse and even children about what you are going through and basic things they can do to help (see above). Kids don't need to know every detail, but enough to know that you may not be 100% yourself and you may need to take some quiet time (see below).

• Self Care is important now more than ever! I attempt to sit daily, uninterrupted with a hot cup of decaf tea (caffeine only seems to rev up my anxiety), listen to some relaxing or positive music (I have an "everything will be okay" playlist), and diffuse essential oils while I read or write. When I am at my worst, I may ask for a few hours and paint for a distraction.

• Lastly, consider seeking professional help. I just started therapy and looking back, I wish I had pursued it earlier before PTSD had taken such a toll on me.

No one ever anticipates how a pregnancy or delivery will go, and sometimes when obstacles throw a wrench in things, you have to do what is best for yourself in order to take care of those around you.

Jill is a wife of 13 years and loves being mom to her nine year old twin boys. Together they are NICU veteran. Jill also delights in volunteering in a Bible education ministry each week and loves to watch design shows. She is currently taking online classes to work in medical billing/coding.

connexions

7

champion steward feature

Diana Farmer, with Aijun Wang (center) and their research team, 2015

curing spina bifida:

fetal pioneer diana farmer leads innovative research, which holds promise of saving lives and lifetimes editorial submitted by champion steward partners at UC Davis Fetal Care + Treatment Center

8

connexions

In the United States each year, between 1,500 and 2,000 babies are born with spina bifida, the most common cause of lifelong childhood paralysis in the United States. The four types of spina bifida range from mild to severe: occulta, closed neural tube defects, meningocele and myelomeningocele.

Spina bifida occurs when the spinal cord improperly forms in utero, leaving a section of neural tube open, exposing tissues and nerves and causing a range of cognitive, mobility, urinary and bowel disabilities.

Spina bifida is a lifelong condition involving multiple operations, many hospital stays and, in some cases, lifelong use of a wheelchair.

While surgery performed after birth can help reduce severity of the effects, repair before birth is proven to be a more successful option to avoid or decrease problems for diagnosed infants. That's because spinal damage worsens during the course of the pregnancy.

One fetal pioneer, Dr. Diana Farmer, who was the first female fetal surgeon in the world, has been on the forefront of spina bifida research for decades. Her mission? To save lives and lifetimes for patients and families affected by spina bifida.

Her latest research, which involves fetal stem cell therapy, holds the hope of providing what so many families are looking for: a cure.

The beginnings of fetal interventions

It has been the lifeblood and mission of Diana Farmer, who is currently chair of surgery and surgeon-in-chief at UC Davis Children’s Hospital, to find a cure for spina bifida.

Growing up in the 1960’s, Farmer’s mother taught Sunday school for disabled children. It was where she first met children who had spina bifida.

“It was a really crummy disease,” Farmer said. “The main reason kids got an operation after birth was to close the [defect] and prevent meningitis. But nobody thought you’d be making them better, functionally. It just didn’t seem fair.”

Those early days planted a seed, which led Farmer to complete her medical degree at the University of Washington in Seattle and her general residency training at UC San Francisco. Her pediatric surgical training was completed at Children’s Hospital of Michigan.

In 1981, Michael Harrison performed the world’s first open fetal surgery at UC San Francisco. Farmer trained under Harrison and was drawn to the field of fetal surgery because it was something new and exciting.

“We saw it as a way to help some babies we couldn’t help after birth and as pediatric surgeons. That’s what we are put on the planet for: to fix babies,” Farmer said.

MOMS study breaks boundaries In 2002, Farmer set out to research whether fetal surgery could help patients diagnosed with spina bifida. With funding from the National Institutes of Health (NIH), researchers performed a randomized trial of myelomeningocele (MMC) closure before and after birth at three medical centers nationally. MMC is the most severe form of spina bifida.

The breakthrough study was called the Management of Myelomeningocele Study, or MOMS. Patients were randomly selected to either receive standard surgery after birth or fetal surgery before birth.

In the fetal surgery group, physicians would perform open fetal surgery between 22 and 26 weeks gestation. Although fetal surgery couldn’t restore already lost neurological function, the procedure could prevent additional loss from occurring during the remainder of the pregnancy.

fluid (CSF) collects in the brain's ventricles.

Forty percent of the toddlers in the fetal surgery group needed a shunt, as opposed to 82 percent of the toddlers in the postnatal surgery group.

In addition, intervention before birth reduced the severity of changes in the shape of the skull called the Arnold-Chiari malformation type II. For a quarter of babies who received fetal surgery, the deformity that was detected on ultrasound had reversed or vanished.

The MOMS trial, which concluded in 2011, is the reason why fetal surgery is offered today for spina bifida.

“Before this, everyone thought that spina bifida was a fixed defect – you were just paralyzed for life,” Farmer said. “But I think the most important part that came out of the MOMS trial was that there’s some hope, there’s some plasticity with the spinal cord, and if we intervene early, we can make a difference.”

For seven years, this research continued, with evaluations of babies done at 12 and 30 months after birth.

When the research ended, the findings were staggering.

Results showed that surgery prior to birth reduced the need for ventriculoperitoneal shunting, or a V-P shunt, which treats fluid build-up in the brain called hydrocephalus. In the majority of babies with severe spina bifida, the alteration to the brain’s development causes hydrocephalus, a condition in which excess cerebrospinal

patient Evie Brave and Breen Hardin on Evie's 1st birthday

connexions

9

Mobility still remained an issue. Fifty-eight percent of the children who were treated in utero were unable to walk independently at 30 months of age. There was more work to be done.

Animal research shows promise In 2013, Farmer embarked upon a new study, this time partnering with UC Davis Surgical Bioengineering Laboratory and co-director Aijun Wang.

Together they investigated the power of stem cells in animal models.

Could human placenta-derived stem cells help repair spina bifida before birth and provide significant and consistent improvement in neurologic function at birth in sheep models?

In a word: Yes. Farmer was able to show that prenatal surgery combined with stem cells, preserved in hydrogel and held in place with a cellular scaffold, preserved the ability of lambs

born with the disorder to walk without noticeable disability.

old, the puppies showed off their abilities to walk, run and play.

Sixty-seven percent of the lambs treated with stem cells were able to walk independently, with two exhibiting no motor deficits whatsoever.

“The initial results of the surgery are promising, as far as hind limb control,” said UC Davis veterinary neurosurgeon Beverly Sturges. “Both dogs seemed to have improved range of motion and control of their limbs.”

The puppies have since been adopted and continue to do well at their home in New Mexico.

In contrast, none of the lambs treated with the hydrogel and scaffold alone were capable of walking.

In 2017, the research team learned that spina bifida affects bulldogs. In an attempt to help the dogs and to show that stem cells can help in other species, two English bulldog puppies born with spina bifida named Darla and Spanky, were transported from Southern California Bulldog Rescue to the UC Davis William R. Pritchard Veterinary Medical Teaching Hospital. The puppies were 10 weeks old and were unable to walk or wag their tails. They were the first dogs to receive a combination of surgery and canine stem cells, this time after birth.

At their post-surgery appointment at four months

one of the pups in their postsurgery garb. Photo credit: Aijun Wang/UC Davis Health

10

connexions

Stem cells – the next frontier In November of 2018, the California Institute for Regenerative Medicine (CIRM) awarded a $5.66 million grant to Diana Farmer’s research team to help them expand on the approach that has been successful in animal models.

The grant enables the UC Davis team to perform final testing and preparations needed for FDA approval to start the first human clinical trial using stem cells during open fetal MMC repairs at UC Davis by 2021.

“There were many times of frustration, many times when cell types we explored and worked with didn’t work,” Farmer said.

“But it’s the patients, seeing

current lab team for the CIRM grant with Dr. Farmer

them, talking to them and working with them, that keeps me motivated to do the science, to keep persevering.”

If the therapy is successful, a long-awaited cure will finally be available for patients like Evie Brave, who just celebrated her first birthday. Her mother Breen Hardin had an open fetal MMC repair in December 2017 at UC Davis.

“The fetal surgery team at UC Davis has been invaluable from day one. They gave us confidence and provided hope during a challenging time,” said Hardin. “I cannot wait to see the advancements that team at UC Davis makes with stem cells. I am hopeful that in the future, children diagnosed with spina bifida will see a cure with stem cells.”

Farmer, Wang and their UC

Davis colleagues note that if their therapy is successful, it will also have an economic benefit for California and beyond. Because spina bifida is a lifelong condition, it has an enormous financial impact on families.

“Spina bifida is a devastating condition for babies born with this disorder and the families who care for them,” said Maria T. Millan, president and chief executive officer of CIRM. “CIRM has funded this important work from its earliest stages and we are committed to working with Dr. Farmer’s team to moving this work to the stage where it can be tested in patients.” hear more on the study from farmer herself by clicking on the below video.

the center

The UC Davis Fetal Care and Treatment Center opened in July of 2016.

It is the second center in California, after UC San Francisco, to offer open fetal surgery and is the only center in inland Northern California. The UC Davis Fetal Care and Treatment Center is a comprehensive fetal care center, offering advanced imaging techniques as well as minimally invasive and open fetal surgery.

It is where Diana Farmer is based and where she continues to break new barriers and create new hope for her patients.

video of diana farmer on her latest spina bifida study

connexions

11

babyproofing: it's never too early to start...

I

by marjorie wrenn

It's no mystery that children are curious and as soon as they are able to scoot, crawl, pull up and move, they can easily get hurt or into things to which they shouldn't have access.

Sadly, preventable injuries are a top cause of death of children (approximately 2,700 annually), and the majority of preventable injuries occur in the home.

More alarming, around 120,000 children are permanently disabled from these preventable injuries, with 70% of those children being under the age of 4. With this staggering statistic, you have to wonder what kind of condition they are in if they are permanently disabled.

When children first begin to crawl, their curiosity about the world around them triples as they want to explore.

Preschoolers and toddlers develop motor skills, but they have poor impulse control and

judgment. Children don’t have the strength, coordination nor maturity to avoid injury, and their curiosity is a powerful force. As a result, they enter one of the most dangerous times of their lives, when they are at the highest risk for injury.

There is no greater devastation than losing a child and certainly that devastation is compounded when the loss is due to a preventable accident. Your question should not be whether or not your child will find hazards in the home, but how soon and where will they find them.

When Should You Evaluate the Safety of Your Home?

It is recommended that you make your home safe before your child is even born, or at least by the time they are six months old. This will give you time to personally adjust to the changes and to develop new

habits of closing gates and doors, latching cabinets, etc. A good checklist to start with includes the following: *latching cabinet doors (especially those near the floor/arm's reach for a little one) *using safety knobs on any door you don't want them using (i.e. garage, outdoors, basement) *using safety plugs in all outlets that are exposed and unused *securing the television and any other furniture that may be at risk of being pulled over (i.e. dressers, bookcases, etc.)

A new “evaluation� of your home and surroundings should be done every four to six months.

Of course, as your child grows and develops, changes will still need to be made, so always keep their safety in mind. For additional safety information and recommendations in your home, visit Child Proof Advice online.

As Founder of Child Proof Advice, Marjorie pursued various directions until developing her own entrepreneurial dream became a driving passion. A perpetual volunteer and always an advocate for children, Marjorie found herself involved in community service activities, all of which centered around helping children. She had a desire to protect this most valuable asset, our children.

12

connexions

2018

research grant recipient Award to Study Non-Immune Hydrops Fetalis: Moving Toward a Precision-Based Approach Hydrops fetalis is a condition in pregnancy involving abnormal accumulations of fluid in the developing fetus. It is diagnosed when a routine prenatal ultrasound shows at least two abnormal fluid collections in the skin, lungs, heart, or abdomen of the fetus. Hydrops carries high risks of stillbirth, early delivery, and serious illness and death after birth, and these risks vary widely by the underlying cause of the hydrops.

The majority of hydrops is nonimmune in nature, meaning that it does not result from differences in surface molecules on red blood cells between the mother and fetus.

Instead, most cases of hydrops arise from chromosomal abnormalities, single gene disorders, birth defects, infections, and other causes.

Current recommendations have been published by the Society for Maternal-Fetal Medicine (SMFM) for work up of nonimmune hydrops, which include detailed ultrasound evaluations, as well as amniocentesis for

Dr. Sparks' team at UCSF, back row (l-r): Julie Harris-Wai, Teresa Sparks, Stephan Sanders, Tippi MacKenzie, Mary Norton, Romobia Hutchinson; front row (l-r): Grace Schwartz, Billie Lianoglou, Meghan Foe

genetic, infectious, and other testing. Difficulty in diagnosing the underlying cause of non-immune hydrops arises when standard tests return normal, and preliminary work by our group showed that the underlying cause remains unclear in 46% of all nonimmune hydrops cases.

Our team at UCSF is dedicated to understanding what caused non-immune hydrops for each case, in order to provide the best care for affected pregnancies, anticipate what will be needed for the neonate at birth, and inform families about what to expect.

Further, a broader approach to work up is needed given the large proportion of cases in which we currently do not find a cause. We are conducting a novel, multi-center collaboration to create a large registry of non- immune hydrops cases containing information about the pregnancies and outcomes, as well as to apply a broad genetic test called whole exome sequencing to discover the underlying genetic causes.

Our research will contribute essential information about the types of genetic diseases leading to non-immune hydrops, as well as how often each type of disease is seen. It will also provide information about outcomes associated with each specific disease, allowing providers to adjust their approach to management appropriately.

This will greatly improve our ability to care for women with pregnancies affected by non-immune hydrops, as well as lead to vital opportunities to improve the outcomes and survival of the fetuses. Ultimately, our goal is to use the information gained from this work to develop a targeted approach to management, including novel in utero management strategies targeted toward each specific cause of non-immune hydrops.

To learn more or donate to the Foundation's Research Grant program, visit fetalhealthfoundation.org/research-grants/.

connexions

13

Connor + Christian, 6 TTTS + SIUGR Survivors

Ava, 3

HLHS Survivor 14

connexions

Colton, 18mos.

LUTO Survivor

Lauren + Megan, 18 TTTS Survivors

Quinn, 2 TTTS Survivor

Gavin + Vance, 9 TTTS Survivors connexions

15

3 things I would tell my pre-kid self...

and how it would change everything I thought I knew about parenting! by talitha a. mcguinness

16

connexions

Remember the days when weekends were for sleeping in and there was no rushing from one birthday party or soccer game to the next, just to fit everything in throughout the day? Yeah, me neither. It seems like those days are but a distant memory. Perhaps it’s because I’ve been raising kids for over 13 years now and so much of life before kids is such a blur (I can't possibly be the only mom who doesn't recall specific details about each birth, who walked when, who said what, etc.).

R

I vaguely remember parties with friends, dinners out and dancing on the weekends, and even that spontaneous trip, mainly because we had the money and time, and nothing else to do.

Even though it’s just a memory, I definitely remember that my evenings weren’t filled with

shuttling kids from one activity to the next, preparing food for my tiny army, conquering laundry the size of Mt. Everest, and the desire to poke out my eyeballs while trying to help with homework. No way.

Whatever those days were, they were definitely not THAT! However, I do remember a time in my life when I wanted nothing more than to get married to the perfect man and become a mom (like since I was 4 years old). I had this beautiful dream of how I would be the perfect mother and would have perfect little children who always listened. Yeah, I know... it was a bit lofty in comparison to my current reality. Fast forward all those years, and here I am married for 18 years and 4 kids later. Is my marriage perfect? Are my children? Am I

that picture perfect mom? Heck no, but aren’t we all a work in progress? Since reality showed me things a little differently, here are a few things I’d tell my pre-kid self to help ease into it:

Love your body and your self.

Remember what your body was like before kids? Yeah, I know, we were a little younger and youth was doing us all kinds of favors, but I totally took for granted how thin, healthy and strong I was. I never realized that after four kids, it might be difficult to lose all of that pregnancy and too-busy-toeat-right-and-workout weight that just, well, accumulated over a span of time. Had I known, I like to think I would have gotten in better shape before I started having kids. And to be honest, it isn't even all about your physical health. Your mental health is equally as important. Take time for you, whether it be through weekends with your girlfriends, a monthly dinner or new experience out, or even quiet time to yourself to read a book, listen to music, or meditate, enjoy the scenery and recharge.

Your body is going to go through some serious changes over the years during and after pregnancy, so be kind to your body and your self. To those of you who haven’t started or are thinking of starting your family, take heart...get into a fitness and eating healthy routine now, and it won’t be so hard to love and take time for yourself once the babies get here. If you're already in the thick of it, it's never too

late to start. Your health (both mental and physical) should be a priority, to be a stronger, healthier version of yourself for yours and their sakes.

You many not be the mom you had planned. And that's ok!

Before becoming a mother, I never would have dreamed I’d be raising adventurous kids and would be enjoying the adventures right alongside of them. Believe me...I'll happily (and a little proudly) admit that I'm that mom. I was made for tackling science fair projects, sewing Halloween costumes, and even helping build extensive dioramas for school projects, all while having the meals and activity schedules planned out for the week. Is there yelling and short fuses?

Absolutely. On a good day, four kids is no piece of cake, but I manage through lots of scheduling, a little balance, a lot of love and an amazing village, (oh, and a whole lot of grace!).

Our kids have run 5Ks, play various sports, have parasailed, are avid snow and water skiiers, go camping and roadtripping, enjoy time on the lake paddleboarding, get plenty of sun and free time at the beach, and hike when we’re in the mountains (it’s great to live in a state where we have so many geographic options!). In all my years growing up, I had never done many of these things, so I love being able to learn them as my kids are learning them, and literally seeing the thrill and fun through their eyes. However,

if you gravitate toward quiet, structured, and a little more low-key, that's totally cool, too.

Finding your style is all part of the "mom" journey, so find what works for you and rock it out!

There are no perfect moms.

I know we all had grand ideas of what we would be as a mom before the children arrived, but I’m sure most of us can put our big girl panties on and admit that things look differently.

We don’t always have clean, well-mannered children in our magazine worthy home, with a home cooked meal spread on the table with each of us gathered around to talk about our day each night. We don’t vaccuum in heels and get the laundry washed, folded and put away all in the same day. We just need to strive to give the best we can with what we have at each given moment. We will learn and grow as parents right along with our children. We will teach them about patience, kindness and grace, about the importance of trying new things, about doing for others, and how to do hard things when obstacles arise (and we all know they will). We will explore and make millions of memories with them, but most importantly, we will cherish and love them and they will know it.

Hopefully, these tips ease your transition (or perhaps soften your perspective on the reality of it all), and you’ll give yourself the grace you deserve to do the best you can with what you have!

Talitha has been a part of crafting much of the creative side of the Fetal Health Foundation for more than 13 years. Married for 18 years and mom to four, with her identical twins being TTTS survivors, she has experienced the spectrum on pregnancy and childbirth. She loves being a resource for other families and providing hope on their journey with a fetal syndrome.

connexions

17

exercise & adhd: it's a no-brainer! by natasha d’anna

18

connexions

R

esearch shows that for older children, 1 hour of exercise allows them up to 4 hours of focus. The trick is encouraging and sometimes even participating or setting an example to make it work. *additude.com During the early 1980’s, research began for answers regarding ADHD, as the recognized behaviors were of chronic restlessness, impulsivity and the inability for a child to stay focused. As awareness of these behaviors amongst children in school by teachers and professionals began to rise, the number of ADHD diagnoses rose, as well. When doctors recognized that hyperactive children also had significant problems staying on task, following instructions or listening to their teachers, they began to look at what factors were contributing and ways in which to harness the hyperactivity in order to increase focus.

The behaviors expressed were soon diagnosed as a hyperkinetic disorder, but with further research, soon changed to attention deficit disorder, or ADD. The direct focus on the behaviors of hyperactivity and impulsivity with the inattention to remain on task became the beginning of the understanding phase of the syndrome. On the other hand, ADHD was beginning to gain more recognition in the behaviors expressed by diagnosed children.

This was mainly due to the struggles expressed with hyperactivity and impulsive behavior.

The rising problem As ADD and ADHD are still relatively new in the clinical world and very popular amongst young and middle aged children, many older people are not aware that they have this diagnosis until adult age. A diagnosis typically comes between

the ages of 5 and 12. Typical symptoms of ADHD include: *hyperactivity & impulsivity *interrupting conversation *frequently talking and moving *struggling to pay attention *easily distracted It is thought that some of the most successful and famous people may have revealed their diagnosis through their behavior, personalities and work. Perhaps among those are Walt Disney, Michael Phelps, Michael Jordan, Justin Timberlake, Richard Branson and the great philosopher, Albert Einstein, to name just a few. It can be safe to say that with the disorder also comes creativity along a spectrum.

The Journal of Attention Disorders shows that the number of prescriptions increased from 34.8 to 48.4 million between 2007 and 2011 alone, making prescriptions for the treatment of ADHD a billion dollar industry within the pharmaceutical realm. There is an estimated 7% of adults and 2 out of every 3 children who are affected by this disorder, making it one of the most common disorders affecting children today. However, many parents are starting to turn their backs on prescription medication and seek alternative care for their children such as clinical therapy.

The general thought is to help children learn to deal with their disorder through focus strategies

connexions

19

and emotional stress management, yet because of recent studies, exercise also seems to offer that fix --without any nasty or harmful side effects to go with it.

An easy fix When we exercise, endorphines are released, but so are other chemicals that improve the brain’s areas of focus and attention, as well as its ability to handle and cope with anxiety and emotions. The natural result for a kid with ADHD who exercises is that they are more readily able and susceptible to learn when it’s time.

The truth is that when people with ADHD find something about which they’re passionate, they will dedicate and push themselves harder than most --and usually succeeding beyond their dreams!

So what does this mean for my ADHD kid?

The ability to exercise your brain, body and build stamina, and to become passionate about something is a great beginner for young and middle aged children who are diagnosed with ADHD. Since kids are in school for so much of their time, that’s a great place to start.

Enrolling your child into a school system with advanced Physical Education classes for structured and guided activities is very important, as is the general assumption that the school encourages movement throughout the day. Some

school systems are keying in on the link between focus and exercise and offer stretching or "brain" breaks, or even begin the day with some form of aerobic exercise to help the students start their day off right.

Outside of the educational system are programs which provide activities focused on enhancing the ability to create executive control in the brain.

Many schools are beginning to see the value and importance of offering these extras, or you can research for similar services in your area for after school or summer programs for your child.

Specifically regarding exercise, aerobics and gymnastics are the top 2 choices for exercising a child’s physical and mental muscles. A semi-disciplinary sport allows for unstructured play, while building endurance to focus on the next step or task.

Check out places like The Little Gym, indoor trampoline parks, or even your local YMCA or Parks and Recreation departments that offer programs to easily fill this need year round.

For older kids, they may be more inclined to invest their time and energy into a school or intramural sport. If they’re not inclined to work well as part of a team, they can also explore more individual types of exercise like karate and kickboxing, dance, tennis, swim, or even running groups.

Other ways to keep things interesting (which kids with

ADHD often need and seek), include encouraging them to bike throughout the neighborhood or local greenway system. They could also train with a running club at your local YMCA to run in a local charity race as a culminating event, or give obstacle or triathlon events a try. It may even be worth looking into a Crossfit style gym where there is a focus on High Intensity Interval Training (HIIT), and where class circuits and people are constantly changing.

Having a routine outlet for their hyperactivity and impulsivity allows kids to be primed for learning. Focus from exercise results in increased executive functioning skills, which are required for organization and time management, skills crucial to both your child’s maturity and academic development.

One last key to success is to have your kids set goals and reward them when they reach them. It could be completing their first 5K or attending so many sessions at the gym, or even improving on a challenging gymnastics or dance routine. Just be sure to steer away from food as rewards and look to activities like going to see a movie, buying a new book or a new building set, or maybe even a special outing or trip as acceptable.

We all know that exercise improves our overall health and our moods. When kids with ADHD incorporate more of it within their daily lives, the evidence is clear --they are clearing their heads and boosting their brains, too!

Natasha is a mom of twin girls, an educator, a self-published writer of a children’s book titled Twindollicious and a blogger, where she shares all things twin like and fashion for kids. She worked in the field of education for almost 10 years before fulfilling her dreams of having children of her own. It was then that she felt she could truly make a difference in a person’s life --- in this case, these two Twindollicious girls with great personalities. Connect with her on facebook and twitter.

20

connexions

Lorenzo, 9 mos.

HLHS Survivor

Chesney, 6

Cleft Lip + Palate Survivor connexions

21

friends steward feature editorial submitted by our partners at Colorado Fetal Care Center

that mama bear thing: ava’s CDH diagnosis after birth Cassie Holt’s labor for her second daughter was so uneventful she took a nap. The doctor woke her up and told her it was time to have a baby. Forty-five minutes later, Ava Jean Holt was born.

She didn’t draw a first breath.

“The nurses suctioned her,” Cassie recalls. “They thought she had gunk in her lungs.”

A chest X-ray revealed a far worse diagnosis: Ava had congenital diaphragmatic hernia. Essentially a hole in the fetal diaphragm, congenital diaphragmatic hernia, or CDH, is usually diagnosed in utero, at the 16-week ultrasound.

That allows providers to develop a birth plan and, often, to surgically intervene before birth.

But Ava’s case had been subtle.

The opening had allowed Ava’s abdominal organs to drift into her chest, crowding her lungs. The result was pulmonary hypoplasia: Her stunted lungs couldn’t supply her body with enough oxygen to survive.

A ventilator wouldn’t be enough. Ava needed a team with the equipment, expertise and experience to keep her alive. Children’s Hospital Colorado’s Flight for Life Team airlifted Ava and her father from their home in Casper, Wyoming, to Aurora, Colorado. There, pediatric by kinan copen

22

connexions

surgeon Kenneth Liechty, MD, and a team of CDH experts were waiting for her. She was in good hands.

“Our CDH outcomes are among the best in the country,” says Dr. Liechty. “We have the meds, the treatment plans, the 24/7 surgical team to repair the diaphragm, the neonatal team to support recovery.”

One of those meds, nitric oxide, used to relax the blood vessels of the lungs to maximize blood flow, was pioneered at Children’s Colorado. It’s now a treatment standard. The neonatal team that first implemented it remains among the top five in the nation, as ranked by U.S. News & World Report.

Within hours, Ava stabilized.

“I drove down there the next day, by myself,” says Cassie. “I guess that mama bear thing kicked in.”

The day after that, Dr. Liechty performed surgery to repair her diaphragm and move her internal organs back into place. The configuration is slightly different — Ava’s bowels zig-zag up and down instead of wrap in a circle — but it works. “Some centers will use a piece of plastic to repair the diaphragm,” says Dr. Liechty. “Here, we use an actual flap of muscle, which will grow as the baby grows.”

The operation went smoothly. Ava spent five weeks in Children’s Colorado’s Level IV NICU — among the most advanced and capable units like it in the nation — while her lungs grew. Cassie didn’t waste that time. She researched. She asked questions. She learned everything she could about Ava’s condition and outlook, and she talked to

other parents she met in the NICU with babies in the same boat. Some she still keeps up with today.

Ava is 3 years old now, and while she’s been late on a few milestones — she took her first steps at 18 months — she’s otherwise indistinguishable from any 3-year-old.

“Just this morning, we went on a 3-mile hike.” Cassie laughs. “I mean, we didn’t really set out to walk that far, but yeah, she’s doing great.”

“Our CDH outcomes are among the best in the country,” says Dr. Liechty.

“We have the meds, the treatment plans, the 24/7 surgical team to repair the diaphragm, the neonatal team to support recovery.”

connexions

23

Gracelyn, 2 HLHS Survivor

Vesper + Olenna, 5 mos.

SIUGR Survivors 24

connexions

Finnley, 10 mos.

HLHS Survivor

Hazel + Juniper, 1 TTTS Survivors

Ethan, 11 TTTS Survivor

Charlotte + Taylor, 3, Angel + TTTS Survivor connexions

25

Yo baby!

Finding Yoga During Pregnancy by kimberly zegil

26

connexions

A

As soon as Eliza was delivered, I knew something was wrong despite the normal progression of pregnancy and various tests along the way. I was allowed to hold her just for a moment before she was whisked to the natal ICU to be warmed up and oxygenated.

A few hours later she was allowed to return to us, and we headed home the next day believing we had skirted a disaster and that all would be well. My three year old, Jake, was excited to have a sister and slightly appalled to now have to share the attention. Despite ginormous amounts of love and nurturing, Eliza began to fail many of a growing baby’s milestones. At six months of age, we had seven different medical specialists involved in evaluating Eliza, including a geneticist and a neurosurgeon.

Our heads were spinning and our hearts were broken. We began to function in “fix it” mode and frankly wondered frequently “how has this happened to us?”

When Eliza was eight months old, we found that we were expecting our third and last child, Aiden. He was born happy and healthy, and we couldn't have been more grateful. My children are young adults and teenagers now and our lives have shifted and adjusted many times throughout those years.

My daughter is about to be 18.

The severity of her disability has shaped our home, defined to a certain extent how we move, how we love, how we see, and

finally how we accept limits and expectations.

I was six weeks postpartum from Eliza’s birth when I landed inside of my first yoga class at our local YMCA. I loved the strength, the quiet, and how quickly my body returned to its pre-pregnancy state. I began to practice three times a week. I quickly began to understand that the only time I was not afraid was when I was on my mat. When all there was to focus on was my breath and the movement, my mind and its chatter began to quiet. It was on my mat immediately after Eliza’s birth and into Aiden’s arrival that faith began to grow strong inside of me. Somehow, I knew I could be the mom I needed to be, whatever challenge arose.

My practice continued as the children grew and I eventually began to teach students and lead yoga teacher trainings. I wanted to share what I believed to be an important arsenal in my mothering toolbox. I was fortunate to take my prenatal training with a practicing doula and therapeutic yoga instructor out of Wilmington, North Carolina. The concentration of our training was to prepare the mother’s heart, mind and body for labor and delivery. Along

with my Nursing background, I began to lead prenatal, postnatal and natural childbirth classes. Inside of regular teacher trainings, I made sure my students understood how to keep the prenatal body safe with the modification of postures and the offering of props to better support their practice.

An expecting mother who already has a yoga practice will often continue to go into her regular classes for a time. There is a comfort and ease for her in this steady place, even as her own body and life are changing quite rapidly. These ladies will usually whisper in my ear before class and let me know. I advise if they become overheated, or tired, or nauseated, to please step outside or find child’s pose.

As pregnancy progresses, I let expecting moms know that means no more being on their bellies at 16-17 weeks, and no deep twists. I also stress that blocks and props are great to accommodate their changing shapes. Sometimes, balance can be an issue and so I encourage a wider stance or being close to a wall. I also let all moms know to avoid hot classes. An expecting mother’s own internal body temperature and metabolism are already higher as baby is growing and developing quickly.

Increased hydration is also encouraged.

Many women come to yoga for the first time through a prenatal class encouraged by a physician, midwife or coworkers and friends. Pregnancy can be a stressful time and studies have shown that prenatal classes help with high blood pressure, insomnia, fluid retention, low back pain, and the list goes

connexions

27

It was on my mat immediately after Eliza’s birth and into Aiden’s arrival that faith began to grow strong inside of me. Somehow, I knew I could be the mom I needed to be, whatever challenge arose. on and on. Most importantly, inside of prenatal classes, is the sense of community and camaraderie that begins to build with these special women. The prenatal teacher often begins the class with the introduction and sharing of experiences, persistent symptoms or complaints in the body, and gratitudes. Sometimes pregnancy can feel like a lonely time in your life. The community that tends to develop is beautifully supportive and many of the mothers follow up with each other even after delivery and into early childhood.

Breathwork is a tremendous component of any prenatal class. Mothers are taught several different types of focused breathing, and specifically, to not only send and feel the breath in different places throughout her body, but to also extend the length of inhales and exhales.

Mothers are encouraged to visualize love, healing, easy and joyful labor and delivery outcomes.

Physically, these classes prepare for labor and delivery by strengthening the legs, finding balance, opening hips,

and keeping flexibility of the spine. Moms often complain of lower back pain and flowing stretches inside of class can usually release and ease some of the strained lower back muscles that can occur as baby grows and tilts the mother’s pelvis forward. Heart opening postures are taught to help mothers find relief in the midback due to rounding the shoulders forward. Bridges can help to expand breathing and relieve heart burn. Specific to labor and delivery, mothers are taught deep squats, such as goddess, malasana, and cats and cows. These postures not only strengthen the legs and open hips, but can help the baby travel through the birth canal and alleviate some of the discomforts of labor.

Perhaps the greatest by-product of the yoga practice is the “quieting of the mind”.

Something beautiful happens for us when the brain can quiet just a moment. It is in that space that we are held; that we can believe and know that we have all we need to care for and love our children.

With that belief, we can face anything and everything.

more on

prenatal yoga...

Here are a few more tips for each trimester to help you get the most out of your yoga experience. Relax and enjoy!

1st trimester tips: * Place yourself near a door in case you need to leave at any time * Avoid hot classes * Rest in child's pose when needed * Avoid overstretching and hyperextending joints * Have a go-to pose as a substitute when others are too difficult 2nd trimester tips: * Create extra space between your legs to make room for your growing belly * Take balance poses near a chair or wall * Substitute for prone or facedown positions * Limit backbending * Use props for safety and comfort 3rd trimester tips: * Use above tips as needed * Avoid all inversions * Slow your pace and intensity, as it will be harder to catch your breath *tips provided by YogaInternational.com

Kim started practicing yoga in 2001 after the birth of her second child. She came to the practice for an alternative to running and found a safe haven from the struggles and fear of having a disabled child. In 2008, along with a good girlfriend, Kim created and opened Gotta Yoga Studio in Charlotte, NC. She has received certifications in ACE Massage Cupping, Thai Yoga Therapy, Reiki, Neuromuscular Medical Massage and the Sacred Hawaiian Healing practices of Lomi Lomi.

28

connexions

mikenzie’s boys

fertility +fate: when three became two by mikenzie oldham

30

connexions

We were told it was the body’s way of natural selection when our triplets became twins. Thankfully, we hadn’t even really been told we were having triplets, yet now we were over halfway through my pregnancy with our twin boys and a rare molar pregnancy that could possibly attach to the boys’ placentas at any moment. If it grew too big, it would take up too much space from them and we would need to do an emergency c-section to get them out. Needless to say, this landed me in the high risk pregnancy category and I was closely monitored for the duration.

We had done years of fertility treatments with our calm, persistent fertility specialist, Dr. Pinto and finally an IVF had worked. We were pregnant! The doctor visits had become almost daily, switching between our regular OB and a high risk OB. Everything during this time seemed frantic. I longed for the pregnant “glow”, but knew I would never have it because of the underlying stress of it all that not many people knew about. We told close friends and family. It just didn’t feel like it was anyone else’s business. I think if anything went wrong, I didn’t want the pressure of explaining it over and over again. I knew I couldn't

handle it.

Every visit with the high risk OB seemed surreal.

He had tiny glasses and wild blonde hair. He always spoke to us with a very excited sense of urgency. We knew this was big, uncommon, unusual. He worried us. He used words like “attack”, “lose”, “cancer”, and even “chemo”. None of these are words you want associated with your pregnancy. I felt I had a monster inside of me trying to harm the two babies I had tried so hard to conceive, and I was powerless to stop it. Being a mother and keeping my babies safe was my most important job and I was already failing.

Basically, during the insemination process, one of the babies ended up with too many chromosomes from my husband and not enough from me to become a molar pregnancy. It continued to grow and take up space and at some point, attached to the other fetuses’ placentas, taking their nutrients. Our doctors explained that it is very uncommon for any other fetus to survive along with a molar. In our case, baby A (Kase), had an identical twin that didn’t form correctly and turned into a molar, which would have been baby B, and baby C is the fraternal triplet who is actually now the viable baby B (Kingston).

At first we were told we had one baby. Then twins. Then triplets. Then twins with a vanishing triplet. Then twins

with a molar pregnancy. As can be imagined, my emotions were everywhere.

We knew at any moment if they said the word, we would need to go straight into the OR. They were constantly looking for any sign that the boys were in distress and they would take me in for an emergency c-section.

Thankfully, our regular OB knew how to keep me calm during the urgency of it all. He challenged me to make it to certain weeks and we would count down the days for developmental milestones, like when their brains or lungs were formed.

At 36 weeks, we were concerned because baby B was not moving.

We went in and they checked me into the hospital to monitor him overnight. They established that he was fine, but since the boys had made it safely to 36 weeks and were extremely cramped in there, it was time to get them out. We got taken down for the C-Section and I waited patiently for the words I had waited so long to hear...

“They are staying”. I knew if the nurses took them that they would be going to the NICU. But no, one by one I heard each one cry and a nurse say “he is staying”. Then I watched as our two doctors removed the molar.

My husband walked up holding both boys and every single fear and worry left my body.

diapers were many, but the house was full of love and soon full of laughter.

The doctors watched me closely for one year after to make sure my HCG levels stayed low and did X-rays and ultrasounds to make sure the molar did not drop any cancer particles inside my body. I now know it was the body’s “natural selection” process. I know that if he had made it, he would have had no quality of life.

However, it doesn’t stop me from often wondering “what if” he would have made it out healthy like his brothers. There would be two of Kase and Kingston would be a triplet! Life would be drastically different.

Wonderful, but different!

I love being a mommy to these two amazing boys, watching them learn and grow everyday.

Of course, there is also a little piece of my heart that will always love someone that never truly existed.

Five days later, we all left as the family we had been trying for, for so many years. Yes, the nights were long and the

Mikenzie is Kase and Kingston’s sidekick. She has expertise in rock hunting and puddle jumping.

They are professionals at saving the world, one day at a time. You can follow all their shenanigans on facebook.

connexions

31

Peter + Maurice, 8 mos.

TTTS Survivors 32

connexions

Michael, 3 TRAP Survivor

Aubree, 8 mos.

HLHS Survivor

Jaxon + Charles, 16 mos TTTS Survivors connexions

33

friend steward feature

B

Before Luke Vela was even born, his older brother nicknamed him Tuff because of the many challenges he’d already overcome.

At 18 weeks gestation, Luke was diagnosed with a fetal congenital lower urinary tract obstruction (LUTO), that was so severe his bladder took up the entire uterine cavity. It pressed against his heart, causing cardiac distress and decreasing amniotic fluid to a dangerously low level.

The Velas were referred to Texas Children’s Fetal Center®, located within Texas Children’s Pavilion for Women in Houston, Texas, and part of Texas Children’s Hospital, one of the nation’s largest children’s hospitals. Texas Children’s Fetal Center is a national leader in LUTO interventions, including vesicoamniotic shunts, a delicate and complex procedure whereby a surgeon connects a catheter from the fetal bladder to the amniotic cavity to bypass the bladder outlet obstruction.

extraordinary care meets extraordinary results in the lone star state editorial submitted by friend steward partners at Texas Children's Fetal Center 34

connexions

“When we were first told about Luke’s condition, it felt like being hit by a bus,” Luke’s father Josh Vela said. “As soon as we met with the surgeons at Texas Children’s Fetal Center, there was a newfound hope in us. I remember that within minutes of making the decision to do the surgery, we had every expert you can think of, urology, nephrology, cardiology, coming in and talking to us about what to expect.”

A unique and distinct advantage for all mothers delivering at Texas Children’s Pavilion for Women is its location inside of one of the largest and most renowned children’s hospitals in the world. This means no risk of transfer during critical postnatal periods – if a baby unexpectedly needs a surgery or the highest level of NICU care, they’re already in the best place to receive the best care.

And for Texas Children’s Fetal Center patients, it means that the full range of pediatric experts responsible for treating a child after birth are an important part of the care team prior to birth as well.

“When you have a complex patient like Luke, you quickly discover you have many doctors involved,” said Dr. Jimmy Espinoza, Luke’s fetal surgeon. “Not only do you need the best maternalfetal medicine specialists and fetal surgeons, you also need the best pediatric surgeons and pediatric subspecialists who will provide care for the patient long after he or she is born. That makes the list of centers that can offer this sort of care very, very small.”

Pioneering treatments that bring new hope Advances in genetics, diagnostic technology, fetal medicine and fetal surgery mean that early detection of fetal problems and anomalies can often be met with equally sophisticated treatments.

Such innovation has helped to change the emotions around a complex pregnancy from those of fear to those of hope.

Since 2001, Texas Children’s Fetal Center has been at the forefront of developing new fetal procedures to treat devastating conditions like lower urinary tract obstruction, congenital diaphragmatic hernia, spina bifida, congenital heart defects, twin-twin transfusion syndrome, and more. Today it is one of only a few centers in the United States to offer the full spectrum of fetal therapies to patients. The center is known for pioneering its own advanced treatments, including EXIT-to-resection procedures and fetoscopic versions of standard open fetal surgeries designed to reduce risk and impact on both mother and baby.

airway obstructions, congenital diaphragmatic hernia, congenital heart disease, craniofacial abnormalities, duodenal and intestinal atresia, esophageal atresia, fetal cardiac conditions, fetal chylothorax, giant neck masses, lung lesions, maternal immune disorders, myelomeningocele, nonimmune hydrops, small bowel obstruction, sacrococcygeal teratoma, skeletal dysplasia, twin abnormalities and urinary tract obstructions.

Dedicated support for every family Texas Children’s Fetal Center believes that caring for both mothers and unborn infant(s) cannot be separated from caring for the patient’s whole family. Their treatment model is designed around giving every family enhanced access to

experts at every level, and around explanations of tests, procedures, prognoses, treatment options, details of recovery, and possible outcomes for every situation.

Every family that comes to Texas Children’s Fetal Center for specialized treatment is paired with a clinical coordinator, highly trained in meeting the needs of patients with fetal anomalies. The coordinator is available to patients and their families from the time of arrival until treatment is complete. This service provides patients and families with a direct link to medical information, insight and explanation, and, equally important, a familiar face to serve as a source of support during treatment.

In addition, patients remark about the extraordinary access and level of responsiveness

Luke’s case is one for the history books.

Survival with normal renal function in such a severe case of LUTO is extremely rare.

– Jimmy Espinoza, MD, PhD, fetal surgeon

Conditions treated include: abdominal wall defects, amniotic band syndrome, central nervous system lesions, congenital

connexions

35

of their fetal surgeons, often receiving immediate call backs, even in the middle of the night whenever there was a development in their case. The center is staffed and supported for surgical or medical intervention 24/7, 365 days a year, with senior physicians always available to discuss diagnoses and care plans with patients or their providers. ~~~~~~~~~~~~~~~~~~ In the end, Tuff proved to be a remarkably fitting and prescient nickname for Luke.

During his first fetal surgery, he was diagnosed with complete obstruction of the urethra, a rare and severe case of LUTO associated with an expected survival rate of under 10 percent. A multidisciplinary team of surgeons performed an ultrasound-guided fetal bladder tap to alleviate the pressure inside Luke’s bladder, and then placed his vesicoamniotic shunt.

underwent a vesicotomy at four days old. Afterwards and remarkably, he was found to have normal renal function.

Over 5 years old now, Luke has some challenges, including chro kidney disease, but he continues to live up to his reputation.

“He is thriving and meeting every physical and cognitive milestone,” Kate said. “There are probably more surgeries in our future, but every time I see him smile, I know that we made the best possible choices, and I would do it all over again.”

It’s with great pride and privilege that Texas Children’s Fetal Center cares for patients like the Vela family, delivering the highest-quality care across the full spectrum of needs, for the best possible outcomes.

To learn more about Texas Children’s Fetal Center, please visit women.texas childrens.org/fetal or call 832-822-BABY (2229) with any questions you may have.

The surgery was a success, but Luke and Kate had to undergo the procedure twice in order to meet the demands of Luke’s growth. At 34 weeks, Luke was delivered via planned cesarean section at Texas Children’s Pavilion for Women.

His completely obstructed urethra made it impossible to catheterize him, so Luke

top to bottom: the whole Texas Children's team; Dr. Lee providing an ultrasound; Luke Vela, his mother Kate, and Fetal Center Nurse Coordinator, Jayme Pack

36

connexions

We’re With You Every Step of the Way Personalized Patient Navigation Genetic Testing & Counseling Fetal Intervention

FULLY INTEGRATED CARE FOR YOU AND YOUR BABY We understand that being diagnosed with a high risk pregnancy can be emotionally and physically difficult.

From the moment you meet our physicians and patient navigators, you’ll experience our dedication to the best possible outcomes for you and your baby.

• Highly experienced and comprehensive Maternal Fetal Team

• Ranked nationally in the top 5% for Labor & Delivery and OB/GYN

• Exceeds the highest standards in maternal care and high-risk deliveries

• World leaders in Neonatal Minimally Invasive Surgical Treatment Options

• Home of the largest Level IV NICU in the Rocky Mountain Region

• Nearly 125,000 patients referred to our Maternal Fetal specialists for evaluation in the last 5 years

CenterforMaternalFetal.com 720-754-RMHC (7642) 37

connexions

home away from home:

keeping it together during a hospital stay by paula yost schupp

W

When most women think of their pregnancies, they picture themselves either scheduling a C-section or beginning to have contractions at home which leads to them reporting to the hospital for delivery. Some women even envision a beautiful, drug free water birth in a birthing center with a midwife or a homebirth. What no woman ever envisions or dreams of is an out of the blue health complication that leaves you on bed rest or in a hospital for long periods of time.

Should you find yourself or should a friend find themselves in such a place, here are a few things you should know and do to survive this time.

First, even if you are placed on bedrest, you will likely be given permission to walk around or move some of the day. Take advantage of every opportunity you are given to get up and move. If you can go outside and the weather is reasonably nice, do that. Often, your nurse can aid you with that. Your muscles and mental health will thank you. I was on a magnesium sulfate drip with my middle child and had a fall risk bracelet on my wrist. My nurse asked me if I wanted a catheter

38

connexions

or if I just wanted to call her every time I had to go to the bathroom. She reminded me that I was in the labor-intensive care unit, so she only had two patients at a time and I was one of them. I really did not want any more tubes in my body than necessary, so I asked her to help me get around when necessary. I’m thankful that I did and I will always be thankful to her for helping me get to the bathroom. The mag drip truly does make it difficult to walk and to feel stable on your feet. Simply getting out of my bed and using the toilet, even assisted, made me feel like a normal woman and not a human incubator. I was in the hospital during a very cold January, but I know other women who could go outside to enjoy spring flowers or fall leaves. Take each of these opportunities. You really have nothing better to do than to care for your body, both physically and mentally.

Second, try to find something to do to entertain and engage your mind. My medical team was horrified to hear that I was richly focused on “The Handmaid’s Tale.” It has a good amount of violence and scenes that make women angry. The show

did touch my emotions, but it didn’t seem to impact my blood pressure one way or another. The show was so intense that when it was on, I wasn’t worrying about me, my baby, or anything else. I was just transported to another world and could focus on that.

Find whatever will do that for you. If reading US Magazine and celebrity trash will do it, read that.

If you need to watch cooking shows or read an intense novel or series of novels, do it. Do anything that will take your mind successfully off of your current situation and your lack of control.

Third, be mindful of your visitors.

Now is not the time to have your mother come visit if your relationship with your mother is toxic and likely to cause you anxiety or raise your blood pressure. If you have a parent who upsets you or says hurtful things to you, they simply do not have to be there. You can text or email the friends you want to see and let them come.

Keep it to people who you truly love and who bring you joy and encouragement. Don’t allow anyone there out of a feeling of obligation. Your health is what matters right now, and both your mental and physical health are directly linked to the health of the baby. Remember, when this is all over, you will have a newborn for which to care, and possibly even a NICU stay to endure.

You're going to need all the rest and preparation you can get in advance of the situation.

Fourth, try to not view the hospital as prison. This is easier

You deserve to be able to grieve whatever pregnancy you wanted to have. if you are in your own home, but for me, I was in the hospital and I absolutely felt like I was in jail. My older son was eighteen months old, at home, and I desperately wanted to bust out of there and go back to being his mother. If you find yourself crying more than what you feel is normal for "pregnant you", please ask the doctor if you can talk about depression or possibly see a counselor while in the hospital. Postpartum depression is a very real, scary condition, and you are far more likely to suffer from it if you have been hospitalized or on bed rest for a long time prior to giving birth. Some antidepressants are not safe for pregnant women, but some are and you are better off to have that discussion with your doctor than not. Some hospitals may have an on-site social worker or therapist who can come visit your room. You may also be able to have someone from off-site come in to visit you. Seeking counseling or medication does not make you weak; it makes you strong and means you are doing whatever you must do to make the best out of a really bad situation.

You deserve to be able to grieve whatever pregnancy you wanted to have. I had

my second son at 27 weeks’ gestation and I still mourn that I do not have beautiful maternity photos of myself carrying him.

Finally, try not to worry about what is going to happen. The fact and truth is that you probably do not have a clue and while your doctors are doing their best to help you, they may not know, either. Trying to Google or WebMD yourself is likely a bad way to use your energy, especially when you are surrounded by experts who already know most everything you can find out online. You may also learn information which, while true, may not be beneficial to you. I learned about all kinds of hypothetical conditions that could have killed my son and I did not need to know while I was growing him in a hospital.

Take each day, sometimes each minute, as it comes, and try to live in the present more than you ever have before. The baby who kept me in the hospital is now a handsome, thriving, intelligent, healthy three year old, and I got to have beautiful maternity photos at another time, when I carried his brother to 36 weeks.

During this trying waiting game, nothing is more important than the health of you and your baby.

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 ten years. They have four children, one adopted and three from scratch. To learn more about Paula, visit countrylawshack.com.

connexions

39

photo courtesy of lauren winslow photography

surviving sleep: daylight savings time tips for new parents by dr. rebecca kempton

Babies are creatures of habit, especially when it comes to sleep.

They tend to doze off and wake up around the same time every day, so attempting to adjust their internal clocks can lead to fussiness. That’s why it’s a good idea to prepare your child for the advent of Daylight Savings Time in advance of the actual time change.

Read on for more helpful tips in making this adjustment.

40

connexions

R

Rather than learning this lesson the tough way, do yourself and your baby a favor by adjusting to these time changes, using a few of the following tips I share with my clients.

Prepare early

The best way to avoid problems is to incrementally adjust baby’s schedule starting three or four days prior to the time change.

Meals, naps, activities and bedtimes should happen 15 minutes later on the first day, then 30 minutes later on the second day, and so on. So, if your child usually naps at 9 a.m. and 1 p.m., start by shifting the naps to 9:15 a.m. and 1:15 p.m. four days prior to the time change. The next day, shift the schedule to 9:30 a.m. and 1:30 p.m. By the last day, your child’s routine should already be one hour ahead of the current time. When those clocks jump forward, it will be like nothing even changed.

When Daylight Savings ends in the autumn, you can apply the same principle by shifting your schedule in the opposite direction. Make each activity occur 15 minutes earlier in the day over the same period of three to four days.

Be consistent

Create a bedtime routine and stick to it. Being consistent with everything you do around sleep is one of the keys to establishing and maintaining a great sleep schedule for your child and your

home. This is true whether you are preparing for a time change or simply winding down any day of the week, month or year.

Establishing a consistent routine is easy to do, and is very relaxing and comforting for babies and children. To get started, make the environment conducive to sleep. This can include dimming the lights, turning on the white noise machine, and closing the curtains. For the actual routine, do a 15-minute series of relaxing activities in the same order every single sleep period. Start with a feeding, either nursing or using a fully-vented bottle, then change your baby into night time clothes to ensure they are awake for the remainder of the routine. The rest of the routine can include things like a gentle massage with lotion, singing songs, reading books, or doing a slow dance to music around the room. Once your baby learns to associate the routines with sleep, they will learn to fall asleep easily and independently, even if the time is shifted.

Go outside

Exposure to light early in the morning is one of the keys to a seamless transition when the clocks move forward one hour in the Spring. Exposing your child to bright light in the morning will alert their brain that it’s time to start the day. So, let the morning light pour in when it’s time to wake up, and get outside to enjoy the early Spring air! Alternately, when it’s time for bed, be sure that your child’s room is dark.

This will send signals to the brain

that it’s sleep time.

Once Daylight Savings Time kicks in, consider spending some time with your child in the great outdoors during daylight hours. That can mean hanging out in the backyard or taking a walk to the park. Wherever you decide to go, the fresh air – and especially the sunlight – can influence your child’s circadian rhythms (the natural sleep/ wake cycle) in subtle ways. The human body tends to adjust its internal clock based on the amount of sunlight we receive, so spending time outdoors when the sun is shining can fine-tune our wakefulness.

(Bonus tip: this helps reset your internal clock when you are jetlagged, too.)

Don’t panic

If you don’t start early, or if you try to make the shift and it didn’t seem to work, don’t worry.

Just continue to stick to your routines, and your child’s inner clock should take the hint within a few days. Kids who are already well rested, adaptable and on consistent sleep schedules will make the adjustment easily within a few days.

Establishing healthy sleep habits is one of the most important things that any parent can do for their child, and it can be both frustrating and exhausting when your efforts don’t seem to pan out or Daylight Savings throws a wrench in plans.

Fortunately, these tips can help you succeed.

Dr. Rebecca Kempton, M.D., is a certified infant and toddler sleep specialist and Baby Sleep Pro founder. She is on Dr. Brown’s Medical Expert Panel. Kempton is a board member of the American Sleep Association and the Family Sleep Institute.

connexions

41

special feature

by donald g. basel, md

genetic testing: I improving prenatal care now and in the future

It’s been 19 years since scientists announced they had successfully sequenced the human genome.

Since then, the field of genetics has exploded, with new technology and lower costs making genetic screening and testing a standard part of today’s health care.

This is particularly true in prenatal care. Obstetricians have long advocated that women have prenatal screening. Twenty-five years ago, ultrasound was the only screening tool.

Then came blood screening tests that measure levels of certain hormones and proteins in a mother’s blood. These tests can say whether a pregnancy has an increased chance of being affected by certain conditions, such as Down syndrome. Women who have abnormal results may choose to have followup diagnostic testing through chorionic villus sampling (CVS) or amniocentesis — both invasive procedures with some risk to the mother and fetus.

editorial submitted by Children's Hospital of Wisconsin 42

connexions

An improved screening option became available in 2011 with the release of the first commercial test capable of sequencing fragments of DNA from the placenta that are circulating in a pregnant woman’s

blood. Called non-invasive prenatal testing (NIPT), or cellfree testing, this test is now routinely offered to pregnant women. The DNA from the placenta usually is the same as the baby’s DNA, so analyzing it provides an opportunity for early detection of certain genetic abnormalities without harming the fetus. The test can be performed as early as nine weeks into the pregnancy up until delivery, with results available within seven to 10 days.

NIPT routinely screens for chromosomal disorders, including Down syndrome and trisomy 18. Screening for other chromosomal and genetic conditions is available, but the accuracy varies based on the condition. However, NIPT screening continues to improve as technology advances.

It’s important to remember that NIPT is not diagnostic. Abnormal results from NIPT screening may lead to CVS or amniocentesis to confirm a diagnosis. However, in the five to six years after the release of the original NIPT screenings, the frequency of amniocentesis or CVS has dropped dramatically in most academic centers.

to meet with a genetic counselor who can help her understand the medical information, as well as options for follow-up testing.

When there is a diagnosis of a birth defect or genetic condition, a genetic counselor can also help a family understand what to expect and how to prepare for the birth of a child with special needs.

Another testing option routinely offered to expectant parents is carrier screening. This assesses the expectant parents’ risk of having a child affected with genetic conditions such as cystic fibrosis, spinal muscular atrophy and sickle cell disease. Low-cost carrier screening tests for these and other conditions are available today. Unfortunately, a lot of these tests are ordered with very limited counseling.

For couples considering carrier screening, it is also important to meet with a genetic counselor who can walk them through the decision-making process, help them decide what testing option

is best for their family and help them make sense of the results when they are complete.

Informed Decision-Making

All prenatal genetic testing, whether carrier screening, NIPT screening or diagnostic testing from amniotic fluid or chorionic villi, is designed to help parents and their doctors make informed decisions about a pregnancy.

Some genetic disorders carry a more severe prognosis than others. Having this knowledge ahead of time can help a family understand what to expect at the time of delivery and prepare to care for a child with special needs.

From a doctor’s perspective, it helps us to know what to expect during the pregnancy and how to plan for the birth.

Genetic screening can also help identify conditions that are potentially treatable before birth, such as spina bifida.

Also, because the test captures DNA from the placenta and the mother, it has the potential to reveal a genetic condition in the mother, something of which women and their obstetricians need to be aware.

The Role of Genetic Counseling

When a woman undergoing NIPT has an abnormal screening result, it is important for her

analyzing DNA from the placenta provides opportunity for early detection of certain genetic abnormalities without harming the fetus

connexions

43

The Fetal Concerns Center at Children’s Hospital of Wisconsin has been performing prenatal spina bifida repair since 2014.

For other conditions, such as spinal muscular atrophy — the second most common fatal autosomal recessive disorder after cystic fibrosis — having a genetic diagnosis before birth allows for immediate treatment after birth.

The Future of Genetic Testing Bringing genetics into medicine has already provided more effective, noninvasive methods to predict or identify disease. As technology improves, genetics will play an even wider role in medicine.

In the Genetics Center at Children’s Hospital of Wisconsin, we are involved in numerous research initiatives that have the potential to improve the health of children and families, including: • Identifying genes that predict the development of type 1 and type 2 diabetes to enable early interventions • Participating with the National Institute of Health’s Pharmacogenetics Research Network to choose medications based on a child’s genetic makeup • Using pre-implantation genetic diagnosis coupled with in-vitro fertilization to prevent transmission of some genetic disorders from parent to child • Conducting studies to identify the genes involved in childhood inflammatory bowel disease, hemangiomas, congenital

44

connexions

heart disease, eye malformations and other childhood disorders The future of prenatal genetic diagnosis lies in the red blood cells from a fetus that remain in a mother’s circulation for years. Some research groups are trying to isolate those cells, then take the DNA, amplify it and do whole genome sequencing to look for potential causes of abnormalities, rather than taking fetal tissue for analysis through an invasive procedure.

Looking forward, I see a world in which we embrace precision health care and use genomic data to guide health interventions over the course of a person’s lifetime. For example, we could know before a baby is born if they are predisposed to hypertension (high blood pressure) or other diseases 40 or 50 years down the road.

Then, working with their doctor, a family can take preventative steps early on to improve their child’s health and wellness.

Donald G. Basel, MD, is medical director of the Genetics Center at Children’s Hospital of Wisconsin (chw.org). He is also co-program director of Neurofibromatosis and RASopathy at Children’s Hospital of Wisconsin and associate professor and section chief of the Genetics Center for the Medical College of Wisconsin.

Fletcher, 3 TRAP Survivor

Khloe, 12 TTTS Survivor

Cambree + Carly, 9.5 TTTS Survivors connexions

45

Haizen + Parker, 3 TTTS + SIUGR Survivors

Anna + Claire, 5 mos.

TTTS Survivors 46

connexions

Andrew, 13 HLHS Survivor

Jonathan, 5 TRAP Survivor

Bianca, 5 HLHS Survivor 48

connexions

Danielle, 9 HLHS Survivor

Ava, 2

HLHS Survivor

Renee + Callie, 7 mos.

SIUGR Survivors

Lenabelle, 4

Tetraology of Fallot Survivor

Dyland, 20 mos.

HLHS Survivor connexions

49

photo courtesy of abbie blair photography

sawyer strong:

proof they are stronger than their stories by heather mariano

50

connexions

A

At 18 weeks pregnant, we had prayed to become parents for over a year and half before finding out that In Vitro Fertilization was our only hope at parenthood. With our first round of fertility treatment a success, our only prayer was for this child to be healthy.

I’ll never forget sitting in that room at our maternal fetal doctor’s office waiting for the results from our anatomy scan.

I never fully understood what maternal instincts felt like until that moment. Something wasn’t right and I felt it in my gut. This was the day we were told that our baby’s heart wasn’t forming correctly and that she would need open heart surgery in order to survive once she was born.

My heart was broken and my emotions lingered somewhere between anger and fear. Over the next few weeks we learned more about our sweet Sawyer and her heart. Her official diagnosis is Complex Congenital Heart Defects which include DextroTransposition of the Great Arteries, Ventricular Septal Defect, Patent Ductus Arteriosus and Pulmonary Stenosis. She had not only one, but four different heart defects.

Our team of doctors talked us through each step, from Sawyer’s birth to her first heart surgery. All there was left to do was wait for her arrival. I was induced at 39 weeks and knew the plan like the back of my hand. Once Sawyer was born, they would check her heart function and whisk her away to the NICU where she would be put on a medication to keep her heart functioning until she was one week old, and then it would be time for her first open heart surgery. Upon arrival in the NICU, we learned that one of Sawyer’s defects, the PDA, simply no longer

existed. Our prayers were being answered. In that same moment, her doctors informed us that because of this, there was a lack of blood mixing in her heart chambers and she would need to undergo a procedure immediately to create more blood flow.

At just four hours old, my tiny girl had her first procedure. I was a mess of emotions. We were told repeatedly that she was doing much better than anyone expected.

Originally, we were told that she would struggle to eat and most likely require a feeding tube, however, Sawyer had other plans, and at two days old while in the Cardiovascular Intensive Care unit she took a whole ounce of milk from a bottle.

Everyone, including myself, was amazed. After a few days in the CVICU we moved up to the Progressive Care Unit, where we continued to work on eating and gaining weight. After eight days, our team gathered to discuss Sawyer’s case. It’s rare for a child with a TGA heart defect to leave the hospital without their first reparative surgery, however, Sawyer was fighting, and doing pretty good at it I might add.

After much debate, the team decided to send Sawyer home and we would plan for her first open heart surgery to be that fall. We were on strict orders to monitor her heart rate, oxygen levels and weight gain. If there were any dips, we were to be admitted immediately. Life at home was great, but also scary.

We were no longer surrounded by a highly trained team of nurses and our team of doctors were no longer just a page away.

We were at home for a little over two weeks when Sawyer’s

connexions

51

oxygen levels dropped drastically.

We were told to pack a bag and head to the Children’s Hospital.

It’s an easy drive, but that day it was a hard drive to make. We were admitted onto the Progressive Care Unit where Sawyer was attached to monitoring leads and oxygen support. She was stable, so we waited for a surgery time.

Sawyer’s open heart surgery was 6.5 hours long. We finally got to see her after a couple of hours, once she was settled in the CVICU. It is hard to see your baby with so many IV lines, chest tubes, drainage bulbs, and a large incision along her small body, but at the same time, I couldn't leave her side. We spent the next seven weeks in the hospital while she recovered. It was not an easy recovery and we met challenge after challenge. On the first attempt to remove Sawyer’s breathing tube, her left lung collapsed, resulting from her left diaphragm being paralyzed. This is a typical complication, but nonetheless, extremely hard for a parent to witness.

Things were beginning to look up, and then Sawyer began not acting like herself. Her team ran test after test and it was then confirmed that Sawyer was in heart failure. During her surgery, a patch was placed over the hole that was created during her first procedure and over time, that patch had torn.

The team decided to place her on medications to manage her heart failure, and we would patiently wait until the next surgery to repair this hole, as long as Sawyer’s heart was in compliance. The meds began to work and Sawyer looked much better. We were discharged from the hospital after nine long weeks with a 3.5 month old baby, a snazzy feeding tube and pump, and a handful and a half of new meds to go along with it.

task, but we found it in time.

Sawyer is currently a wild and smiley eight month old. She has proven to us time and time again what strong looks like. We have many more surgeries in her future, but if you didn’t know any better, you would never know that she proudly wears a heart warrior scar.

Home felt different now and finding our normal was no easy

photo courtesy of abbie blair photography

Later down the road, the breathing tube was successfully removed, but Sawyer had a hard time breathing without assistance.

Feeding became our next biggest hurdle. She developed a feeding aversion and required an NG feeding tube, which is placed in through the nasal cavity. When her stats bottomed out at the time the feeding tube was being placed, it was quickly determined that Sawyer was no longer a candidate to go home.

At three months old, Sawyer had to undergo another procedure to place a more permanent feeding tube into her stomach in order for home to even be a possibility in the near future.

52

connexions

from top to bottom: sawyer in the nicu after surgery and held by her mom at 8 months old

S a v e

t h e

D a t e

Perinatal Care and the th 4 Trimester:

Redefining Prenatal, Postpartum, and Neonatal Care for a New Generation

Meeting families' biological, physical, emotional, and social needs.

APRIL 1 - 3, 2020 i n COLORADO

Children's Hospital Colorado Educate. Advocate. Integrate.

41st Annual Interdisciplinary Conference www.nationalperinatal.org/2020 Scholarships and continuing education credits are available. connexions 53

special feature

expert care from the cincinnati fetal center editorial submitted by the Cincinnati Fetal Center

W

When a fetal abnormality has been diagnosed, pregnancy can quickly turn from feelings of joy and excitement to fear and worry. At the Cincinnati Fetal Center, our team of experts is dedicated to exploring the unique challenges and opportunities facing each patient and unborn baby.

As we do so, we often are able to provide innovative treatment options that offer real hope.

Our team is led by physicians from Cincinnati Children’s, Good Samaritan Hospital and University of Cincinnati Medical Center, who specialize in treating complex and rare fetal conditions. As experts in maternal-fetal medicine, neonatology and fetal surgery, we share a passion for providing exceptional, comprehensive care. Our extensive experience, coupled with our clinical and basic science research to improve fetal care, enables us to provide the most sophisticated, effective therapies available.

Care for the Full Spectrum of Fetal Conditions

The Cincinnati Fetal Center is one of only a few comprehensive fetal care centers worldwide. We use advanced technologies and cutting-edge therapies to treat a variety of medically complex fetal conditions, including: • Amniotic band syndrome • Bladder outlet obstruction (BOO) • Chorioangiomas/placental tumors • Complex multiple gestations

54

connexions

• Congenital cardiac disorders* • Congenital diaphragmatic hernia (CDH) • Congenital pulmonary airway malformation/Congenital cystic adenomatoid malformation (CPAM/CCAM) • Fetal teratomas and other tumors • Myelomeningocele (MMC)/ spina bifida • Twin-reversed arterial perfusion (TRAP) sequence • Twin-twin transfusion syndrome (TTTS) * in conjunction with the Fetal Heart Program at Cincinnati Children’s We offer sophisticated diagnostic testing and comprehensive treatment options. Our center’s distinctive three-hospital collaboration allows us to draw on extensive resources as we develop treatment plans tailored to each of our individual patients.

Prenatal Surgery a Success

Nineteen weeks pregnant with her third child, Camilla King had a routine ultrasound that uncovered a complication in her pregnancy. Camilla and her husband Joseph discovered their unborn son had myelomeningocele or MMC, a serious birth defect.

their maternal-fetal medicine specialist. They drove four hours for an evaluation and learned the risks and benefits of having the hole in their baby’s back surgically repaired while Camilla was still pregnant, versus waiting until after the baby was born. “They did a great job of presenting all of the facts about our options, positive and negative,” says Camilla.

Stevenson, MD; Jose Peiro, MD, PhD; Mounira Habli, MD; Charles Vorhees, PhD; and Foong-Yen Lim, MD. Nine weeks later, Oliver was born vaginally and the surgical repair on his back was in excellent shape.

Prenatal repair closes the hole in the baby’s back while the baby is in utero, through open surgery or fetoscopic surgery, which is less invasive. Research has shown that babies who receive prenatal repair of myelomeningocele through open surgery can significantly benefit. The outcomes of fetoscopic surgery are currently being studied.

“We are one of only a few centers in the world to offer fetoscopic MMC repair,” says Dr. Lim, surgical director of the Cincinnati Fetal Center. “We were very pleased with the outcome of Camilla’s surgery and are happy to see how well Oliver is doing today.”

The Kings chose for Camilla to have the prenatal fetoscopic MMC repair. Camilla was 25 weeks pregnant, and the fivehour surgery was successful.

Her care team included Charles

Our Team

The Cincinnati Fetal Center is a multidisciplinary program with a core team of faculty and staff who provide highly specialized, compassionate care, with our patient’s needs always at the forefront. Our team is made up of:

Fetal

• Maternal-fetal medicine physicians • Pediatric surgeons • Neonatologists • Clinical director • Advanced practice nurses • Nurse coordinators • Labor and delivery nurses • Research nurse + coordinator • Social workers • Genetic counselors • Senior director of operations • Program manager

Also called spina bifida, MMC occurs when a portion of the spinal cord and surrounding nerves protrude through an opening in the spine. This exposes the baby’s spinal cord to the amniotic fluid in the mother’s womb and can be harmful to fetal development.

The Kings, from Nashville, Tennessee, were referred to the Cincinnati Fetal Center by

He is now 8 months old and making progress hitting his milestones. “He is such a happy baby,” Camilla says.

Sub-specialties 8 month old Oliver, making progress and hitting milestones

• Anesthesiologists • Fetal imaging radiologists • Geneticists • Cardiologists

connexions

55

• Nephrologists • Neurologists • Urologists • Neurosurgeons We partner with these specialty divisions to provide individualized counseling and care management planning for prenatal and postnatal care.

Comprehensive Evaluation, Diagnosis and Treatment When you are referred to our center as a patient, one of our nurse coordinators will speak with you by phone to gather your background information.

Using this information, along with any referral notes and test results, the team will determine which of our specialists are best suited to care for your needs.

These physicians will work with others at the center to provide: • Diagnostic testing • Fetal assessment • Prenatal counseling • A management plan • Fetal interventions/surgery • Support services • Postnatal care • Long-term follow up We provide care in an atmosphere of compassion, knowing that our patients and families are often dealing with difficult decisions and fears about the future. Collaboration is at the heart of our approach.

Patients, family members and referring physicians are all part of our team, and we encourage referring physicians to contribute their own insights to the patient’s care.

Innovative Treatment Options

Our physicians are passionate

56

connexions

about finding novel therapies to improve surgical outcomes and enhance quality of life for patients. Innovation is a hallmark of our approach to care. Our center is one of only a few in the United States to offer fetoscopic repair of spina bifida or MMC, fetoscopic tracheal occlusion for severe congenital diaphragmatic hernia (CDH) and laser surgery for twin and triplet pregnancies affected by twin-twin transfusion syndrome (TTTS) including TTTS patients who present with anterior placenta, hydrops and short cervix.

Our team also offers nonsurgical therapeutic options.

Among them: • Intrauterine transfusion • Steroid therapy • Expectant management • High-risk pregnancy management • Genetic and prenatal counseling • Management of short cervix Careful prenatal planning allows us to anticipate potential complications that may occur following delivery and establish a strategy for managing those problems. We work closely with specialists at Cincinnati Children’s, who have extensive experience in caring for critically ill newborns and providing long-term follow-up care to help them reach their full potential.

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

the team...

Foong-Yen Lim, MD Surgical Director Jose Peiro, MD, PhD, MBA Endoscopic Fetal Surgery Director William Polzin, MD Maternal-Fetal Medicine Co-Director Arthur Evans, MD Maternal-Fetal Medicine Co-Director Paul Kingma, MD, PhD Neonatal Director Kim Burton, MSN, MBA, RNC-NIC Clinical Director Mounira Habli, MD Maternal-Fetal Medicine Specialist Sammy Tabbah, MD Maternal-Fetal Medicine Specialist *****

learn more...

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

Ezra, 3 mos.

HLHS Survivor

Maggie 10

Turner Syndrome Survivor

Sophia, 11 HLHS Survivor connexions

57

friend steward feature

A

As Sarah Prowell and Sean Kirby watch their newborn, Uriah, kick his legs between naps, they are hopeful for his future. At 18 weeks pregnant, Uriah’s mom learned that he had spina bifida, a debilitating birth defect affecting 1,500 to 2,000 American babies a year. In its most severe form, babies with spina bifida are born with an opening in their backs that allows part of the spinal cord and nerves to protrude.

"We were both pretty distraught at first and worried about his life — the road ahead of him," Kirby said.

Without medical intervention, Uriah faced a list of potentially serious disabilities, including paralysis, lifelong bladder issues and infections.

kicking the odds meet uriah: the first baby in north texas to undergo surgery before he was born editorial submitted by friend steward partners at Medical City Children's Hospital Fetal Care Center 58 connexions

Kevin Magee, a maternal-fetal medicine doctor and Medical City’s Medical Director of Fetal Interventions at Medical City Dallas, advised Uriah’s parents that his best option was to have spine surgery while still inside the womb. Early correction of these problems prior to birth can increase the odds of a healthy baby.

“I had never heard of fetal surgery before this,” Sarah said. “I was just excited that we could do something to help his future.”

Dr. Magee recommended Timothy Crombleholme, MD, director of the Fetal Care Center at Medical City Children’s Hospital, one of only a handful of surgeons and programs nationwide qualified to perform open surgery on unborn babies.

Dr. Crombleholme and a team of multidisciplinary specialists successfully performed complex open fetal surgery on Uriah last June — the first procedure of its kind at Medical City Children’s Hospital.

“Performing open fetal surgery is a team effort among many exceptionally skilled clinical experts,” Dr. Crombleholme said.

“We have a very large multidisciplinary team that starts from the first moment a patient arrives.”

A comprehensive team of specialists cared for Uriah and Sarah, including a maternal-fetal specialist, Dr. Magee, a pediatric neurosurgeon and specialized, highly trained fetal nurses. This complex open fetal surgery should help mitigate lifelong disabilities for Uriah caused by spina bifida.

“It went beautifully,” Dr. Crombleholme said. “It really went without a hitch. We had as small as an incision can be for repairing a defect. It could not have gone better. We were really very, very pleased. Uriah is doing great.”

Uriah’s squirming and kicking his legs are signs of surgical success.

The Fetal Care Center at Medical City Children’s Hospital in Dallas is one of only a handful of centers in the world that has the capability to perform the full range of fetal interventions, from ultrasound-guided procedures to fetoscopic surgery to open fetal surgery and EXIT procedures.

“The thing I enjoy most is being able to make an impact in a child’s life,” Dr. Crombleholme said. “Not for a week, or a month or a year, but potentially for 85 years. Many of the conditions we treat are life-threatening, and these babies wouldn't be here without this intervention. And what really makes what I do so rewarding is when I get letters from moms on the occasion of their child's graduation from high school, remembering that day when they had surgery in utero to save their baby's life, and how that stays with them. That's very gratifying.”

Medical City Dallas is home to both Medical City Children’s Hospital and Medical City Women's Hospital Dallas, making its campus the only one in North Texas with

a full-service children’s hospital and an obstetric hospital within the same facility, keeping mother and her newborn together.

Medical City Dallas has treated generations of women from North Texas and beyond since opening its doors more than 45 years ago and has a proud history of caring for the unique needs of women, including those with high-risk pregnancies and deliveries.

Medical City Children’s Hospital is a 208-bed comprehensive, awardwinning pediatric healthcare facility in Dallas, Texas, established in 1996. World-class pediatric specialties include congenital heart surgery, hematology and oncology, craniofacial surgery, kidney transplant, neurosurgery, orthopedics and fetal surgery.

Medical City Children’s Hospital offers a Level IV NICU, the highest level of neonatal care available in Dallas. Medical City Children’s Hospital was recognized by The Joint Commission in 2015 as a top performer on key quality measures and was named a top 10 Best Hospital in Texas by U.S. News and World Report in 2018.

Medical City Children’s Hospital is part of Medical City Healthcare, one of the region’s largest healthcare providers.

a sleeping baby Uriah

we deliver dreams Medical City Healthcare offers high-quality labor and delivery services at nine locations throughout North Texas. Combining clinical excellence with highly personalized settings, Medical City hospitals feature spacious private rooms, choice of delivery methods, expert childbirth classes, celebratory gourmet meals and so much more — all backed by doctors, nurses and staff who are ready to help you create the memory of a lifetime.

A birthing experience just right for mom and baby can be designed along with the highest levels of medical care.

Medical City Women’s Hospital Dallas serves women with a wide variety of complex healthcare needs, from maternity to gynecology and cancer care. Medical City Women’s Hospital Dallas offers high-level clinical excellence in a peaceful, spa-like environment. A multidisciplinary team of physicians and specially trained staff provide leading edge treatment for women at all stages of life, including highrisk pregnancies and deliveries.

Learn more at WeDeliverDreams.com.

connexions

59

eli's story: finding a miracle at the end of a luto diagnosis “There’s a major problem with your pregnancy.”

Words no expecting parents anticipate hearing. Going in for our routine twenty-week ultrasound, I was so excited to find out what we were having.

After about fifteen minutes of maneuvering the wand all over my modestly pregnant belly, the ultrasound technician informed us she would be getting the doctor. The doctor came in and that was when we heard the words that would forever change our lives. Everything else seemed foggy after that. I remember hearing words like, “the bladder isn’t releasing urine” and “the amniotic fluid level is dangerously low.” To be honest, I understood very little, until he sat us down in a consultation room and gave us our options.

That was when the grim reality of our situation hit me. Without

60

connexions

intervention, our baby was likely to not survive the remainder of the pregnancy.

Our maternal fetal specialist went on to explain our baby was suffering from a condition known as a Lower Urinary Tract Obstruction, also known as LUTO. He gave us information and warned us not to Google any of what he was about to tell us, because there would be a lot of misinformation on the internet and he didn’t want us to make a decision based on what we might find. He went on to explain that because of the obstruction in the urethra, urine was unable to be released from the bladder. The bladder was large, and the amniotic fluid levels were dangerously low because a large portion of the amniotic fluid is made up of the baby’s urine. It’s a constant cycle of ingesting the

by emily hyde

amniotic fluid, which aids in the development of the baby’s lungs and other vital organs, and then excreting the urine. When there is a hiccup in the process, the entire cycle stops.

We could terminate the pregnancy or “just let nature take its course”, which would likely result in our baby passing inutero or shortly after birth. Our third option was a long shot. If our baby was a candidate, we could have fetal surgery performed.

The rest of that day was a nightmare. Friends and family were calling anxious to hear the outcome of our ultrasound and find out if we were having a boy or a girl. It was difficult to get through the phone calls, trying to explain what we were still struggling to understand ourselves. We had a million questions and went against our

doctor’s advice, but we found the Fetal Health Foundation, known at the time as Fetal Hope. It was exactly what we needed.

We read about a little boy named Elijah Wick, who was five years old at the time. We were given the hope we were looking to find, that there was a possibility our baby could have a good life. This little boy, living only about 500 miles away in Jacksonville, Florida, had survived a fetal surgery for the exact same condition, was living a “normal” childhood. This was the one sliver of hope we needed to give us the push to do everything we could to save our baby’s life.

I had several tests performed that revealed we were having a boy, and that our son was a candidate for fetal surgery. We traveled to the Children's Hospital of Philadelphia once we got the news. The doctors wanted to make sure we knew that fetal surgery would not be a “cure”; that it would simply aid in reaching a viable delivery date.

More surgeries would be needed throughout his life. The fetal surgery was a success, and I went back home where I would continue routine monitoring.

relocated and later discharged from the NICU at All Children's in St. Petersburg in January 2010.

Over the next two years, he would have more procedures, including the placement of a g-tube and multiple bladder modifications.

In the spring of 2012, we moved to Indiana, where he'd continue his care at Riley Children's Hospital. We began the workup necessary for him to receive a kidney transplant. Our routine consisted of going to the hospital three times a week for him to receive hemodialysis, which lasted 3-4 hours each session. In September 2013, Elijah received a kidney from his uncle (my brother). It was the beginning of a whole new life for Eli.

years post-transplant, he still has the g-tube, but only uses it to receive medications. He also no longer receives dialysis; in fact, he only has to go to the hospital once every three months now for check ups with the transplant team.

Eli is now in third grade, and while he still receives medications daily, he shows little signs of the tough journey he endured in his first few years. He has learned to take great pride in his battle scars. A day never passes that we don't stop to reflect on the journey we've all been on together to get to this point. If the past nine years have taught me anything, it's to hold on to my faith, that miracles can happen. I am a mom to one.

Since his transplant, life has gotten increasingly better with his "new to him" kidney. Prior to his transplant, he was completely reliant on a feeding tube for all his nutrition. With kidney disease often comes growth struggles, so the g-tube helped him get the extra nutrition he needed to continue growing. Now, five

One month after the surgery, the shunt placed dislodged, so we opted to go back to Philadelphia for a second procedure. The doctors predicted premature labor due to all the invasion of the womb, so they suggested I stay there until delivery.

At almost 34 weeks gestation, on November 21, 2009, I delivered a 5 lb. 9 oz little boy, who we named Elijah. At birth, they declared that he was in kidney failure and that his lungs were underdeveloped.

While at CHOP, he was on various breathing machines and he also had his first surgery. He was

eli in the nicu at birth, eli with his kidney donor and uncle, thomas hopkins, right after surgery and present day

connexions

61

better bedside manner: offering keepsakes after a loss editorial submitted by now i lay me down to sleep

62

connexions

S

Suzy enjoys living her passion through her career as a labor and delivery nurse. Like so many in her profession, Suzy plays an important role assisting families throughout the birth process, working on a team with physicians, midwives and other medical professionals. Taking care of a birthing mother while she is in labor reminds her that she is living her passion.

On occasion, Suzy’s joy of helping a mother deliver a healthy baby is turned to grief when a parent receives word their child will never leave the hospital. As a medical provider, it can be difficult to shift gears from the joy of hearing a baby’s first cry to caring for parents that will never hear their baby make a sound. Bereaved parents need different support.

A Different Kind of Support

Over the past 14 years and tens of thousands of interactions with families, as well as thousands of hospitals through our photographers, the Now I Lay Me Down to Sleep organization has identified 3 key points for medical providers to consider when working with bereaved families. These will create a better sense of bedside manner.

TIP 1: Validate the Life of the Baby

For parents that are experiencing pregnancy and infant loss, the medical staff plays an important role in the first days of a parent’s grief journey. Grieving parents look to their nurses and doctors to reassure and guide them through the time they are able to spend with their babies, whether it is just a few moments, days, or the baby is born sleeping.

Acknowledge the pain they are experiencing. Allow them to cry, and cry with them if appropriate. Call the baby by name. Mention the features of the baby as you would a healthy baby, such as, “Look at the head of hair on Kaylee; it’s beautiful.” or “Look at Kaylee’s delicate little hands, they are so precious.”

Parents may be hesitant or feel uncomfortable touching or holding their baby. Let them know it is okay to touch and hold their baby if they desire.

Also, be sure to prepare the mother for postpartum changes, including milk production.

Discuss her available options in the event she produces milk.

● Footprint/Handprint molds ● Pregnancy and Infant Loss book

It is easy for parents to jump forward to “what could be.”

However, it is important to avoid talking about future pregnancies, unless the parents prompt the conversation. Instead, encourage the parents to be present with their baby by bathing their baby if allowed, dressing their baby, and spending time alone with their baby without guests.

As one of the few people who see and hold these precious babies, you are able to offer a treasured gift of portraits to bereaved parents. Families will be treated with compassion through thoughtful interactions from NILMDTS staff and volunteer photographers. The most common response from bereaved parents who decline these photography services is that they wished their medical provider would have been more persistent. When offering NILMDTS services:

TIP 2: Offer Keepsakes

Many hospitals have small or even elaborate care packages that are donated by nonprofits or parents who have experienced a prior loss. Don’t hesitate to gift the parents with whatever you have. Some remembrance items that would be helpful to the family include, but are certainly not limited to the following: ● Angel Gowns ● Blankets and/or Hats (Sewn, Crocheted, Knitted, or purchased new) ● Small stuffed animal for the parents to hold ● Blank Journal

Sometimes parents don’t know how to utilize these items when they are with their baby and will look to the medical staff to help them understand how they can create memories of their baby by utilizing these items. Several of the items such as the blanket, hat and stuffed animal are meaningful props that could be used while taking photographs.

Help incorporate keepsakes into photographs while the parents spend time with their baby.

TIP 3: Gift Remembrance Photography

● Offer services as soon as possible. Do not promise a photographer will be available. ● Have the mom sign a Hospital Authorization Form to be kept with her chart. This will authorize you to call a NILMDTS photographer. ● Parents will be given a tangible gift of high-quality images of their baby as a part of their healing recovery and a forever keepsake.

If a NILMDTS photographer is not readily available, NILMDTS

connexions

63

The Fetal Care Center at Medical City Children’s Hospital in Dallas provides critical care to the most vulnerable patients.

It is one of only a handful of centers in the world that has the capability to perform the full range of fetal interventions on unborn babies with complex birth defects.

With both Medical City Children’s Hospital and Medical City Women’s Hospital Dallas within the same facility, we are the only campus in North Texas where mothers and newborns can stay together.

In fact, parents can have complete peace of mind knowing that our Level IV Neonatal Intensive Care Unit provides the highest level of care to the most medically fragile infants.

To reach the Fetal Care Center at Medical City Children’s Hospital, call 972-566-5600, 24 hours a day, seven days per week, or visit MedicalCityChildrensHospital.com/FetalCare.

64

connexions

has created a Posing Guide for Hospitals and Posing Poster located on their webpage. The Guide is a great reference for posing the baby alone, as well as with the parents and/or siblings, incorporating special keepsakes like a lovey or blanket, and capturing their tiny features.

Care for your patients

Even if a family declines, it is important to ask again. Remind parents that they never have to look at the photographs, but they will never be able to have this opportunity again. It is important to encourage families to take their own pictures in addition to the NILMDTS professional photographs that they will be given. They can never have too many photos of this moment. This will give them a variety of photographs they can utilize for their own healing journey, and the photographs may be appreciated by others within the family, too.

How to Find a Photographer

NILMDTS can assist in locating a local affiliated photographer to capture images for a bereaved family. If a patient is expected to deliver overnight, it is recommended that you call prior to delivery so that a photographer can be arranged for first thing the next morning.

You can also conduct a search for local photography contacts on the NILMDTS webpage.

The organization is always seeking new photographers to add to their database, as well. If someone you know may be interested in becoming involved with providing such an invaluable service for NILMDTS, there is a host of information on how to apply, what is expected

within this role, and other volunteer roles that may be of interest all available on the NILMDTS website.

Guidelines for Services

At the request of the parents or medical staff, we will have a NILMDTS affiliated photographer, if available, come to the hospital or hospice location. Our affiliated photographers are dedicated to making the photography session as loving, sensitive, and private as possible, as this is ultimately your way of honoring your baby's legacy. When searching for a local NILMDTS photographer visit www.nilmdts.org for contact information in your area.

NILMDTS photographers provide the free gift of professional quality portraiture. Gently retouched black and white or sepia toned heirloom quality portraits are delivered digitally.

Retouching

If a NILMDTS photographer is not available, please utilize the instructions for submitting images for retouching to NILMDTS in order to ensure the highest quality photos possible for this special moment in time.

Remembering

As long as a family lives, they will always remember the baby they lost. Encourage them to find ways to honor and remember them, whether it be through a special walk, through donation and volunteering to a favorite charity, or even through remembrance moments and items such as capturing their tiny hand and footprints, or releasing butterflies each year.

Incorporating them into their lives will help their baby live on.

testimonials...

“I am a NICU nurse, and I am so very grateful for all that you photographers do. I'm so grateful for your willingness to always come, the many times that I've called you. I'm grateful for your kind and gentle souls who treat my families and babies with such love and compassion. And I'm especially grateful for this little piece of heaven that you allow my families to keep of their precious angels!� ~ Mandy, NICU Nurse "We hesitated at first because we wanted all the time we could have uninterrupted. We realized though that we would have the photos for a lifetime.

I was so glad we decided to get them done. The photographers were so amazing and gave us the time we needed as we had to stop a few times." ~ Emily, in memory of Diarez Eugene

Additional Information on NILMDTS

Now I Lay Me Down to Sleep (NILMDTS) gifts heirloom remembrance portraits to parents experiencing the death of a baby. Since 2005, nearly 50,000 families from around the world have received photographs free of charge from NILMDTS.

connexions

65

special feature

Y

“You hear stories every day of people who go through difficult pregnancies, but for the most part, everyone you know gets pregnant and life goes on.

When we first heard our diagnosis, we thought ‘Oh– I’m one of those rare stories that everyone hears of,” says Brooke Ricafort.

rocky mountain hospital for children: expert care for complex congenital diagnoses editorial submitted by our partners at Rocky Mountain Hospital for Children 66

connexions

Brooke’s daughter Audrey was born and received all of her care by the acclaimed multi-disciplinary Maternal Fetal Team at Rocky Mountain Hospital for Children (Denver, CO). After experiencing an abnormal finding during an ultrasound with her OB/GYN, she was referred to Rocky Mountain Hospital for Children for further testing. That testing confirmed a cardiac abnormality and a 22Q deletion (sometimes known as DiGeorge Syndrome). While the deletion itself can affect many systems and have multiple associated birth defects, for Audrey the primary concern was her heart.

22Q deletion syndrome is something Cathy Burson, Genetic Counselor, at Rocky Mountain Hospital for Children is very familiar with. She adds it is second only to Down Syndrome as the most common chromosomal condition her expert genetic team sees.

“Although 22Q deletion can sometimes be detected in cell free fetal DNA in mom’s blood, diagnostic testing is done when clinically indicated, like in Brooke’s case. During pregnancy, testing can be performed to confirm the diagnosis,” says Cathy. “Diagnosis can also be confirmed at time of delivery if parents don’t want to do invasive testing during the pregnancy.”

audrey after surgery; today at five years old With the additional information, parents have time to connect with others in similar situations, as well as better prepare for a high risk delivery. Based on the results and suspected associated conditions, their delivery method may change and they may be advised to deliver at a hospital like Rocky Mountain Hospital for Children, where the multi-disciplinary neonatal teams are experienced with managing their high risk delivery.

Brooke says that being able to learn about Audrey’s condition ahead of time afforded her and her husband the gift of knowledge.

“We met with the doctors to understand treatments and technology and we were able to get familiar with the hospital and the drive – because we didn’t live near the hospital,” Brooke said.

When they first met Audrey’s cardiac surgeon, Dr. Steve Leonard, they learned that Dr. Leonard had more than two decades of pediatric cardiac surgery experience. They were assured by his expertise as they reviewed the diagnosis, talked through the anatomical differences between Audrey’s heart and a normal heart, and discussed the expected treatment plan.

Audrey, whose heart was the size of a walnut when born, would need intricate surgery to repair her heart valves and her tiny pulmonary arteries (which were only 3 millimeters wide).

Audrey was born full term on Monday, December 2. She was immediately brought to the hospital’s Level IV NICU at Rocky Mountain Hospital for Children (the largest Level IV NICU in the Rocky Mountain Region). Dr. Leonard, who is an integral part of the multidisciplinary Maternal Fetal Medicine team at Rocky Mountain Hospital for Children had Audrey in the operating room on December 6 and performed a successful 9-hour operation.

Audrey was able to go home 18 days later – just in time to be at home with her family on Christmas Eve. Today, Audrey is a happy and jovial 5-year-old girl, and according to her mom, just sassy enough to push her limits where she can. Brooke adds, “She’s proud of her scar. She tells people, I have a special heart.”

Since Audrey’s first surgery, she has had an additional valve surgery and several visits to the catheterization lab --- all at Rocky Mountain Hospital for Children. Brooke reminds families that “Whatever your journey, have confidence in yourself that you can do this.”

we are here for you.

Being diagnosed with a high-risk pregnancy can be emotionally and physically difficult. From the moment you meet our physicians and patient navigators, you’ll experience our dedication to the best possible outcomes for you and your baby.

At the Center for Maternal Fetal Health at Rocky Mountain Hospital for Children, the medical needs of both high risk moms and babies are met in the same place, keeping the family together under one roof.

Learn more by visiting CenterforMaternalFetal.com.

connexions

67

Omar, 16 mos.

HLHS Survivor

6 mos. TTTS + CHD Survivors

Trulyn, 11

Sawyer, __ mos.

Cleft Lip + Palate Survivor 68

Riley, Brooke, Hannah,

connexions

CHD Survivor

Ashley + Aspen, 15 TTTS Survivors

Douglas, 5

Prune Belly Survivor

Caelie + Ella, 13 TTTS & ABS Survivors

Pratley, 5

Cleft Lip + Palate Survivor connexions

69

preeclampsia + how it snuck in by paula yost schupp

I

I was 35 years old and 26 weeks pregnant with my second child, Pierson. My first child was full term and I had no idea what preeclampsia was. My feet were hurting and swollen. That had happened during my pregnancy with my first child, but not until the end. My first child was two years old and he had had a stomach virus with some vomiting. I was having a lot of loose stool. I assumed that I had just caught what my son had. I never dreamed that the swelling and the loose stool were symptoms of preeclampsia.

New Year’s Eve came, and I was not feeling well. I tucked my oldest into bed when a blinding headache struck. I was very sensitive to light and my head hurt worse than anything I had ever experienced before. It felt like a fist was squeezing the base of my brain and I felt electricity go up through my skull. My husband took me to the hospital. On the way, the pain was so severe I told him that I believed I was having an aneurysm.

photo courtesy of firewife photography

Upon arrival at the hospital, my urine was tested and the nurses said it had the highest level of protein possible.

That alone is a major indicator for preeclampsia. My blood pressure was 198/95. When I’m not pregnant, my blood pressure is normally 110/70.

Based on the results of the urine and the blood pressure, I was diagnosed with preeclampsia, and just like that, everything about my previously normal pregnancy changed. I had absolutely no previous history of preeclampsia or high blood pressure. My only risk factor was that I was thirty-five years old and now past the 20-week gestational mark in my pregnancy.

I was admitted to maternal ICU and immediately received a steroid shot. The nurse explained that this was to help grow Pierson’s lungs so that he would have the best chance of being able to breathe if born soon. Then, she hooked me up to the “mag” drip. She put a yellow arm band on me that identified me as a “fall risk.”

70

connexions

The mag is designed to lower blood pressure and prevent preeclampsia from turning into eclampsia, which causes seizures and worse. It has several side effects, but the ones I had included feeling cold, weakness, muscle tightness and contraction, and anxiety. After several hours on it, I could no longer stand up on my own (hence, the "fall risk" band).

My nurse offered a catheter, but I preferred to toilet on my own with her help. Out of everything that ever happened to me while pregnant, the mag drip made me physically feel the worst.

Luckily, I came off the mag after 24 hours, and I felt a lot better.

My nurse warned me I may be in the hospital for several weeks because if my blood pressure got high again, I could have a placental abruption and that would merit an emergency delivery. In order to be discharged, I had to meet with Maternal Fetal Medicine and they were out until Monday. I was stuck for the weekend.

On January 3rd, a neonatologist came to see me. The biggest takeaway was that twenty-seven week babies have a 95% chance of survival. They just have a long stay in the NICU. If my baby arrived early, his skin would not be like my skin and I would not be able to hold him for a while, though I would be able to look at him in the NICU, and eventually visit.

I also remember asking if this was my fault. Did I do something wrong? He said, “Absolutely not.

This is not your fault. I have seen 23 year-old marathon runners with preeclampsia. We have no idea what causes it. It's a mystery of gynecology, but it is definitely not your fault.� He will probably never understand how much peace

...twenty-seven week babies have a 95% chance of survival. They just have a long stay in the NICU. those few sentences gave me.

That reassurance was absolutely what I needed to hear and what every pregnant woman should know, if she has a brush with this condition.

While the magnesium is a buyer of time, unfortunately, I woke up in the early hours of January 4th hallucinating. My blood pressure spiked to 204/98. The nurse immediately called the doctor, who soon arrived and told me that it was time to have Pierson.

He assured me that I was going to be fine, but that it was time to get the baby out of my body.

What happened after that was all kind of a blur.

When Pierson was born, I heard a small sound that was

reminiscent of a kitten. I asked if that was my baby and the doctor said that it was. I glimpsed Pierson before they wheeled him away to the NICU. He was in plastic wrap. My beautiful boy weighed 1lb and 14oz. He was the smallest human I had ever seen alive, but the key here was that he was just that --- alive.

He was small, but he was mighty. I recovered quickly, but he obviously had many hurdles to cross over those next few months. I continue to be thankful that both of us are alive, especially knowing what so easily could have been.

Know the signs. Alert the doctor if you suspect preeclampsia at any point. It could literally save the life of you and your baby.

pierson when born in the nicu; mom, paula with pierson, age 3

more to know...

Preeclampsia effects the blood flow to the placenta, and can also affect the unborn baby's kidney and liver function, cause blood clotting problems and more, if left untreated. If you experience an onset of swelling or sensations of generally not feeling well, it is best to alert your physician to determine if preeclampsia is beginning, in order to begin treatment if necessary.

connexions

71

As a leading patient advocacy group for families facing a fetal syndrome diagnosis, we are HOPE.

Learn how you can help families celebrate birth and beyond.

72

connexions

www.fetalhealthfoundation.org