The most confusing part of this was our doctors’ differing opinions, and that there was very little research about this condition.
By Penelope
Our first real sign that something was wrong with my pregnancy was when the first-trimester screening results came back abnormal. The NIPT test was inconclusive, and the other result showed that I had very low PAPP-A levels. These two results made the doctor very suspicious that the baby had Trisomy 13 or 18. However, I did the CVS, and the results came back normal. At my 16-week appointment, the doctor thought the uterus was measuring fine. We were able to relax, and we thought, enjoy the pregnancy.
At our 20-week scan, again everything was structurally fine, but the baby was measuring on average more than 2 weeks behind. His arms and legs were only measuring 15 or 16 weeks. What most concerned the doctors was that the Dopplers were abnormal–meaning that the baby was not getting enough blood flow. The doctor thought it was likely that the placenta was not working well, creating severe early onset IUGR. This time, it really felt like something was seriously wrong.
We went for a follow-up scan at 21 weeks, and the blood flow situation seemed to be worsening. We held out hope that at the 23-week scan, our baby boy would have somehow defied science and still been able to grow. We read through countless journals, articles, and stories of other people in similar situations. It seemed like sometimes, the blood flow would improve, and the baby’s growth would magically catch up.
At 23 weeks we went in for another scan and an echocardiogram. While nothing was wrong with the heart, the blood flow situation was getting worse. Now there was absent end flow, meaning that the baby would only receive nutrients about half the time. The cardiologist and her team even saw occasional reverse flow, where instead of nutrients going to the baby from the placenta, the placenta would take from the baby. He had grown a bit since the 20-week scan but was now more than 3 weeks behind, and many measurements 5-6 weeks behind.
Differing Doctors’ Opinions
The most confusing part of this was the differing opinions we got, and that there was very little research about this condition. Our OB-GYN thought the most likely scenario was that the baby would die in a few weeks. She thought that if he made it to 28 weeks, he would have a very high risk of either dying or having severe neurological problems. We then met with two NICU doctors, one who was very optimistic that the baby would be healthy and fine, and another who thought the risk of death or severe disabilities was really high.
We started thinking through all of the different scenarios. We already had a healthy daughter who had been born at full term, and our doctor thought a subsequent pregnancy would most likely be completely normal. While we were prepared for the baby to be stillborn or even die a few hours after birth, what scared us most was some of the other, highly likely possibilities. The doctors talked about some situations where the baby would live for a month or two and then develop a disease in the NICU and die, or just simply not be able to thrive. What scared me even more than this was the possibility of any severe neurological disabilities–and how this would dramatically affect everything about our lives, in particular, our ability to give our daughter a happy childhood.
Doctors’ Ideology Over Facts
In the end, we felt we had to ignore the doctors’ personal opinions, as they seemed to be somewhat based on ideology rather than facts. We had about a 50% chance of a stillborn, a 15% chance of the baby dying after birth, and a 15-20% chance of the baby having severe neurological problems. Even if the baby would be relatively healthy, the doctors thought he would likely have some sort of disability, like blindness or deafness. What made us finally decide to terminate was that all of our doctors told us that the baby would not get past 28 weeks, and likely weigh no more than 450 grams (less than a pound). He would spend his first few months on tubes, with the doctors seeking a very fine balance between giving him oxygen to survive while preventing brain bleeding.
We went back and forth on the decision for several days, but because of the laws in our state, we had to make the decision before 23 weeks 6 days. We went in for a final scan on the last possible day, at 23 weeks 6 days, hoping for a miracle. But, the blood flow was still absent. Because of the rules around termination, I had to have a KCL injection that day, and then spend three days with the dead baby inside me while awaiting the dilation and evacuation procedure.
The Worst Part
The KCL injection was the worst moment of my life. While I didn’t watch, I could feel the baby’s life stop. Everything felt so heavy afterward. The next two days I went in for the dilation procedure, and finally the surgery on the last day. While it had been so sad and painful to know the baby was no longer living, when he was finally really gone after the surgery, I was absolutely devastated.
Through this whole experience, I came to realize that there is such a disconnect between the information we are able to get from science, and what doctors are actually able to do. On top of that, the laws around termination make everything worse. While we were able to learn that something was severely wrong with my pregnancy, there was literally no intervention available except for the doctors to deliver the baby before he would be viable. I also sometimes wonder, if we had been able to wait until 26 weeks to terminate, would the blood flow have improved? Could the baby have been fine?
The most difficult part about this was all of the unknowns. Would he have beaten the odds, and been able to survive a 4-month NICU stay to be healthy? While I wanted to believe this, it felt like every time we had any hope, the worst would happen.
Some Relief
Although I still wonder and question my decision, I also felt some relief when the termination was over. If we had continued and he had lived, I would never have stopped worrying–up until delivery, after he was born and in the NICU, and probably for years after if not forever, because of all the possible complications. The one thing that gives me some peace is that a baby being born at 28 weeks, and at less than 1 pound, is not natural. Living like that on breathing tubes and in a plastic bag cannot be what a baby wants to experience in his first months of life. Most likely, the natural thing would have been that he would have died before we met him, but because of how advanced science is, I was forced to make this decision.
The night before the termination, we talked to the baby one last time and told him we loved him and that he will always be a part of our family. We told him we will miss him every day, and we’ll always wonder what life would have been like if he were here. I also told him that he has changed my life forever, and promised that I would make that change be a positive one. I am still struggling to keep this promise because I am so heartbroken, but I hope that in a few months, I will be able to.