Grace, Virginia

I was 23 years old when I met my husband. I knew we were soul mates from the beginning, but we waited to get married for three years so I could finish up my doctoral program. I wanted to have my job started and my license before we got married and started our family. We knew we wanted a big family and needed to start early. We started early, but ran into problems immediately. After almost a year of not having any cycles and going to three different doctors that said I was young and didn’t have any reason for fertility problems, I finally was diagnosed with PCOS (Poly Cystic Ovarian Syndrome). I was told that I was having insulin resistance attributed to my hormone imbalance.  Basically they were telling me I was pre-diabetic because of the hormone problems. I was told that we were never going to have kids on our own and that we needed to talk with a fertility specialist. More importantly, I was sick, and if I didn’t get these hormones under control I would be diabetic soon, have high blood pressure, cardiovascular disease, increased risk of stroke, cancer, the list went on. I knew I needed to get myself healthy and figure out the rest as we went.

It was the week before Thanksgiving when they said I had to give up carbs–me the self-proclaimed carboholic.  It was torture but I did it with my husband. He was amazing.  Here he was faced with the possibility that he would never be a dad (and he really wanted children) and he dedicated everything into getting me healthy again. He would make sure each meal we ate was very healthy and low-carb to combat the diabetes.  He made sure I was on top of all my medications and exercised with me. He supported me seeing a counselor for my depression and went with me to discuss the new reality of what our life might be like if we couldn’t have that big family we had always talked about.

It was a Thursday when I went back to the doctor to check on my improvement with my health. I was excited to go in because I had worked really hard and lost 25 pounds in 10 weeks. I remember it like it was yesterday.  I decided that I was going to ask about what would be our next step in starting fertility treatments. For whatever reason, we decided that morning to take a pregnancy test. We had taken a million before with no hope that the result would be any different from those. I wouldn’t even look at it, but I told my husband that he could look at it because I couldn’t be disappointed again. He walked out of the bathroom saying I might not be disappointed this time, and held up the digital test with word “pregnant” on it. Just like that I was a mother… finally a mother!

We were told to be cautiously optimistic because women with PCOS have a higher rate of miscarriage in the first trimester because of the hormone problems. We waited impatiently, day after day, week after week, and at eight weeks we went back and they did an ultrasound.  We saw our perfect baby on the screen, and we heard the heartbeat.  I lost it and cried uncontrollably as I was so happy. They told us to come back in a month for our 12 week appointment, and that if we made it that far we wouldn’t have any other problems. We went back for that appointment.  It was my birthday and I had just turned 27 years old. We heard the heartbeat again and we were told that we could tell our friends and family now, since we were out of that “window” of worry. They gave me a referral to have a first trimester screen done so we could see our baby again, as they didn’t do ultrasounds often in the office due to time constraints. A week later our life would turn upside down.

We went into the appointment on a Monday before work. I laid back on the table.  The technician asked us about nursery colors, names, and all those exciting things you get to do when you are expecting. She took a bunch of pictures, promised us she would pick out the best for us to take home, and said to wait for the doctor. We waited, and waited, and waited. After over two hours we told them we had to leave to get to work.  They said we had to wait for the doctor and he would be with us soon. He finally walked in and said he had bad news for us.  Our baby had his organs growing outside his body. My heart stopped and I couldn’t breathe.

I switched into doctor mode.  What did we have to do? Surgery? If so, when could we go in? What doctor would perform it?  Did I need to get an MRI so they could get all the information? What did we have to do? He didn’t say anything.  He pulled up the monitor and performed the ultrasound again.  He showed us the organs, noted that the heart had multiple defects, and said that there was a hole in the abdomen called a gastroschisis.  He said that there was no link to genetic problem, and that “these things just happen”. He said there was nothing we could do, we should terminate and move on to the next pregnancy.

What?!!!!! Just like that, terminate.  No way, this was my baby, my much-loved and much wanted baby. I wasn’t one of those lucky women who just blinked and got pregnant, we struggled for almost a year to conceive. This couldn’t be happening. He was very nonchalant  in delivering the news, like he was ordering take out. I asked what our other options were, and he said we had none. I asked again and he suggested that we get a second opinion. I said that would be the best option for now. I asked about that ultrasound picture the technician had promised us. He asked if that was really the healthiest thing for me. I said I wanted it and he questioned me again and then I demanded it.  I knew that this might be the last time I would ever get to see my baby. He gave us the most grainy picture that you could barely see and walked out without even a goodbye. We were ushered out the back of the office so we didn’t upset the other patients. All of a sudden we were like lepers; no one wanted to talk to us, to touch us, or to be associated with us and our sick baby.

I was told my OB would call me later that day but no one did. I called them the next day and explained what had happened. They said they were too busy and were going to call me at the end of the week. I was shocked.  I just found out I had a high risk pregnancy and they weren’t going to talk to me about it. I told them that the doctor advised me to terminate, but that I was going to get a second opinion. I was hoping they could recommend a doctor for me to see, but they said they didn’t perform terminations after 12 weeks and we were 13 weeks. I told them I understood, but I would like a referral to a good high risk doctor.  They said they couldn’t help me. Not even with a referral.

Two days later we were at Children’s Hospital for our second opinion.  We got another ultrasound, and this time the technician made sure we got a beautiful picture our baby. The radiologist came in and worked with the technician to get all the pictures they needed. She said we were misdiagnosed, but she would elaborate more when we met her in her office in a few minutes. We were given a glimmer of hope! They walked us to the office where we met with the radiologist, a pediatric surgeon, and a genetic counselor. They sat down and started to tell us that our baby’s organs were not growing on the outside of the body from a hole in the abdomen, but were in a sac outside of the body called an omphalocele.

According to the doctors and the research, it is a sac through the umbilical cord in which some or all of the abdominal organs grow.  It can vary in size and severity. In our case it was considered greater than a giant omphalocele. Giant omphaloceles are categorized when it is greater than 40% of the trunk size.  Our baby’s sac was greater than 100% of the trunk size, so that meant it was bigger than the baby’s entire trunk.  How is that possible? The heart had at least 5 defects, which is known as a Pentalogy of Cantrell .  The heart was being pulled into our baby’s abdomen because of the weight of the omphalocele.  The lungs were only 30% of the size they should be. The concerns the doctors had were that the omphalocele would grow as the baby did, and the liver would roll over, cut off blood supply to the other organs in the sac, and then the baby would die of organ failure and sepsis. The pediatric surgeon explained that if we made it term, we would have a c-section performed and the baby would go into the NICU to be put on a ventilator.  We would wait to have the baby stabilized, then surgery would begin to insert skin expanders so they could begin the process of a series of surgeries to put the baby’s organ back in the abdominal cavity. There would be at least six surgeries in the first year, another series of surgeries for the heart defects, a chest plate for the abnormal rib cage development, and if the baby ever came off the ventilator it would be at least 3 years in the hospital. We then were told about genetic tests we should consider doing because this diagnosis did have some links to genetic disorders. I asked what our prognosis would be in 4 weeks when we were 16 weeks and could start getting some of these tests done. The radiologist said that it would stay the same or become worse if the baby made it that far.

We met with my grief counselor to discuss our new reality. What should we do? Why do we have to make this decision?  Why did this have to happen to us? The reality was that we were the parents, and only we could make the decision that was best for our child.

Terminate or continue to term with a poor prenatal diagnosis. My husband was completely supportive of whatever decision I wanted to make since it was my body.  My parents, both of whom come from Christian families, were also supportive of us with whatever decision we made. My in-laws, who lost their own child to congenital defects when he was a day old, were also supportive of any decision as long as I was healthy. We had a decision to make.  We finally had doctors that we treating us like we were patients and hadn’t just written off our baby. I asked the doctors what they would recommend for my health and they said that termination would be the safest, but if we decided to continue to term they would ensure we had the best treatment once our baby was born.

I work with children with genetic and congenital disorders on ventilators. I had treated them for over a year a half since graduating school. I knew what the prognosis meant,  and I knew what the reality of our baby’s life would be like. I knew that they wouldn’t live on a ventilator for long with all the complications that are associated with this. Our baby, even if they lived, would never be able to go outside, would never be able to talk, or laugh, or lay on their stomach so they can learn to crawl.  They would never be able to walk. I told my husband it was our decision and while he was supportive of me, I would be supportive of him. If he wanted me to continue, it was his baby, too, and I would do it. He said that he wouldn’t risk the complications of this pregnancy to my health.

The decision was made, but how would we come to terms with that? Who would help us? My own doctor had abandoned me. We talked with the grief counselor and she asked us this simple question, “If the baby had been born, given the same prognosis, would you have kept them alive on life support or would you have discontinued medical intervention?” I knew my answer.  I would have stopped medical intervention.  She said that was all we were doing, but in this case the life support was my body.

The genetic counselor helped us find a doctor to perform the procedure. Like Children’s Hospital, this doctor, too, was out-of-state. I had a D&E a week later.

It was a two-day procedure.  The first day they inserted laminaria sticks to help me dilate. Afterward, they let my husband and I have a few minutes to cry because we knew this was the beginning of the end. The doctor explained that the baby would pass instantaneously, and that our baby would not suffer. She assured us that the horror stories we had read about were not true.

The next day, I sat in pre-op waiting for my surgery,.  One of the nurses was very rude to me after she read what procedure I was going to have, and would barely come over to get me prepped.  Several other nurses noted this and took over my care and allowed my husband to come back and wait with me so I didn’t feel so scared and alone. When we shared why we were there, they were very understanding and thought we were very brave to go through with it. The doctor came back and asked if we wanted foot prints once they were done with the procedure. We said yes.  Then I was taken back, I was sedated, and I cried as I fell asleep. I woke up shortly afterward.  The doctor stayed with me a few minutes and cried along with me. She offered us a small book with our baby’s foot prints. I was released that day.

The genetic counselor called a few weeks later and said that the tissue samples they took during our procedure revealed our baby had a fatal genetic disorder called Trisomy 18, also known as Edward’s Syndrome. Our odds of this happening with my age and risk factors was 1 in over 10,000. The more important thing we found out was that our baby was a boy. We had a son.  We had his foot prints. We had heard his heart beat. He had less than a 1% chance of making it to term. If he had been born, the most they could have offered him was “comfort care,”  which meant they would have pumped him with pain killers and waited for him to pass away “peacefully.,”  He wouldn’t have lived longer than one day.

Our baby’s remains were cremated and we have since planted a tree and buried the remains in the soil. Some life should come out of all this loss. We planted the tree on his expected due date, six months to the day we said goodbye. It was early fall and the tree wasn’t blooming. We had just found out we were expecting again, a rainbow baby after the storm we had just endured.  She was born in the spring, and the day we brought her home from the hospital our tree was blooming. Maybe a coincidence, or maybe a sign that our son is still with us in some way and always will be.

There are days my mind brings me back to all these events and thinking about the questions the technician had about our nursery.  We had said we were decorating it with dragonflies.  We thought it was simple, gender neutral, and pretty. Since then, we have researched dragonflies and have found that they represent rebirth and maturity, often living short but fulfilling lives. It feels fitting in that our son is like our little dragonfly.  He lived a short life, made us appreciate our life as it was, and brought us to a new maturity in ourselves and our relationship. He finally has his wings to carry him to a life better than what he would have had with us, in a body that had already betrayed him. I have no regrets with my decisions, just the fact that my son was sick, and that neither medicine, science, nor we could do more to help him. He will forever be our hearts and in our souls.