Kind, Compassionate Care When We Needed It Most

Sep 25, 2018 | Congenital Diaphramatic Hernia (CDH), D&E, Stories

So much information was being explained to us. But I only heard the scary keywords: deformed, suffering, uncertainty of survival, termination. This was the most difficult news of our life.

By Lillian

Adam and I have been together for eight years, happily married for more than six, with two beautiful, healthy and extraordinarily happy and capable daughters. When we found out in June that I was pregnant with our third child, we were overjoyed. My pregnancy felt like all the others—morning sickness most of the day, exhaustion, lots of heartburn, and so much to look forward to. We were thrilled to add more love and joy to our family and quickly shared the news with our inner circle of family and friends.

In August, it was finally time for our favorite prenatal appointment: the detailed anatomy scan. Our ultrasound technician, along with Adam and I, began the session like “old pros.” Everything looked good, I could barely contain myself as I sat on the exam table, eager to meet our baby more intimately. Adam and I chit-chatted with the technician, kibitzing and laughing when we recognized familiar features on the ultrasound images—baby’s feet, fingers, heartbeat, a big nose and butt, and well-developed brain. At the end of the scan, the technician asked me to get dressed and said that the doctor would be in shortly to discuss the results.

We waited, and then waited some more. That’s when I knew this would not be a typical visit.


A diagnosis of CDH

Our precious baby, who was at 14 weeks gestation in utero, was diagnosed with Congenital Diaphragmatic Hernia (CDH), a rare and likely severe condition. Dr. R, a Maternal Fetal Medicine doctor, along with a genetics counselor, were assigned to our case. They quickly explained the diagnosis—a hole in our baby’s diaphragm had caused their organs to move to the top cavity of their body. The stomach was up in the chest cavity and the baby’s heart was pushed to the right side of the body. The baby’s lungs were unlikely to fully develop.

The medical professionals didn’t know if this was a random mutation or if inherited genetics had caused it. It was too soon to tell the severity of the diagnosis. Most CDH cases are not detected this early, but there is often a correlation between age of detection and severity of the disease. So much information was being explained to us. But I only heard the scary keywords: deformed, suffering, the uncertainty of survival, termination. This was the most difficult news of our life.

We had no choice but to go from tears and panic mode to understanding and problem-solving mode. We set up a second opinion with Dr. R’s colleague, who would perform an amniocentesis to help us understand genetic cause—if any. My husband Adam took the lead in determining what else we could do to be better informed and equipped to understand this news.

Adam immediately called his brother, an MD and research specialist, to help us better understand the diagnosis. We also hoped his brother could help us find experts in the field. We quickly asked our beloved nanny to stay late and come early to watch our other children so Adam and I could have time to process and attend every appointment that we could secure.

Adam’s brother said he had heard good things about Dr. N, a Perinatal Medicine and Genetics doctor, at UCSF. Apparently, Dr. N was an expert in CDH. She was possibly the best doctor in the country, if not the world, in the field of CDH. We called her office right away but were told we needed a referral from our doctor to get an appointment. Our insurance wasn’t willing to give a referral because they wanted us to get a second opinion from an in-network doctor instead. We needed and wanted to move faster than that.

Our (in-network) second opinion at Kaiser was not for another week. We couldn’t schedule additional investigative appointments until week 18 or 20 as our regular doctor’s technology couldn’t register details of our child’s anatomy until there was more gestational development. The last thing we wanted to do was to drag out the process for another four, six, or ten weeks to determine what the outcome for our precious child would be.

On Wednesday night we went for a walk at the Botanical Garden around the corner from our home. There we brainstormed who we were connected to at UCSF. Who could get us on the phone with Dr. N, the CDH expert? We thought that maybe one of the fellow parents at our daughters’ preschool might be able to help. He had worked at UCSF for 4 years—we decided it was worth a shot. After some urgent calls and emails, we were on the phone with Dr. N. by 8pm that evening.

Dr. N gave us her opinion on the next steps, which included an appointment with her as soon as possible. We got an appointment with Dr. N that next Monday morning and then scheduled an appointment with her colleague at the Fetal Heart Center on Wednesday. Over the next week came even more referrals to high-risk pregnancy specialists. We had more, longer, in-depth ultrasounds and an echocardiogram to determine if any defects in the heart were present as well.

In the meantime, I was living a horror that I never knew before. Adding to the pain of the diagnosis, I started to be able to feel the baby move. My pregnancy became more physically noticeable to people around me. I couldn’t sleep and could barely eat, and every time the baby moved, I suffered. I couldn’t finish most sentences without sobbing. Trying to stay distracted, I worked whenever I wasn’t at an appointment and spent more time with my daughters to immerse myself in their joy and play.


But I could never shake what was on the top of my mind—our choice. I could try to live with the child inside of me for 100 days or more, swallowing tears at every cheery inquiry as I grew bigger with the uncertainty of our child’s quality of life if he or she even survived the pregnancy. Or I could have an abortion. And the choice wasn’t just about me. Continuing the pregnancy would mean my young children and loving husband would have to see their mother endure this torture. I would give birth to a baby that would either be whisked away to machines or would be stillborn. The machines would assist the baby’s breathing and feeding. Our baby would have live with nurses to prepare him or her for multiple surgeries within the first days, weeks and months of life. Or I might give birth to a baby they would never meet.


Our decision

We finally were able to make our choice. Near the end of August, we made the painful, but we believe, compassionate and informed decision to terminate the pregnancy. Our visits with Dr. N and her colleagues empowered us with the information and confidence we needed.

The day after we made our decision we had a pre-operative appointment with a different Dr. N at Kaiser. This doctor is a rockstar and luckily my best friend’s primary OBGYN. Dr. N’s stellar and honest reputation preceded her and I was lucky to be in her capable and compassionate hands.

As life goes, the day before my abortion was also my youngest daughter’s first day of preschool ever. I missed drop off. I missed seeing her excitement and capable eyes as she went into the school on her own for the first time.

Meanwhile, my best friend and her gift of gab and fab accompanied me to the appointment where the doctors began the dilation process for the next day’s procedure. Adam was able to meet me at the end of the appointment. He got to meet with Dr. N again and ask some final questions about the next day’s procedure. We spent the rest of the day distracting ourselves with brunch, furniture browsing and Costco runs.

My abortion was on Friday, August 27th. I was 15 weeks and 2 days pregnant. I know I will mourn the loss of my baby every day. But I have no doubt that Adam and I made the right decision for ourselves and our family. I am grateful that it was our choice to make.

We are indebted to so many people who supported us over those final ten days. My medical providers, for their compassion and care. Our rabbi and our doula for their spiritual counseling. My mother for dropping everything at a moment’s notice to support us and our daughters. Our sisters, brothers, and friends for their emotional support and check-in texts and calls. Last but not least, we were fortunate to have access to high quality and well-coordinated health care. Every practitioner answered our questions, spent hours in-person, by phone and over email to give us as many options as possible and followed our lead.

My one hope after this entire experience is that Congress and our President do not remove the opportunity for women to make a choice. Every mother must battle through her own hell to decide on and find the medical care she needs, gather her friends and family to lean on, and grieve. Banning abortions would place an unimaginable burden on all women in every socio-economic situation. When an abortion was the best of only horrible options, I was beyond grateful that one was available in a safe, compassionate medical establishment as soon as we made our decision.

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