I found out I was pregnant towards the end of July 2016. My husband and I were thrilled. We already had a 4 year old daughter and were excited to be expanding our family. I had a tough first trimester, feeling very tired and nauseous, but all the indicators for the pregnancy were good. All the genetic tests came back normal and we learned that the baby was a boy. We had an initial anatomy scan at 16 weeks and a full scan at 20 weeks and all looked great. We spent Christmas with my family, and shared the news with the extended clan and everyone was happy for us.
Then at 26 weeks I went for a growth scan, which revealed serious abnormalities. The four ventricles of his brain showed abnormal levels of fluid and no one could tell us why. The head and abdomen were also measuring small (microcephaly), about three weeks behind normal development. The doctor had us both drawn for additional blood tests and performed amniocentesis to try to determine the cause.
The following week, we had a fetal MRI performed which showed ventriculomegaly (the above mentioned fluid in the brain) due to the brain’s failure to develop. The baby also showed signs of fighting an infection, with an abnormally large liver and spleen. The radiologist told us that he couldn’t determine the cause, but informed us that these findings would have serious implications for the health of our son, with indicators for cerebral palsy and epilepsy, among other developmental issues.
The following day, I got a call from the high-risk OB and he told me that the initial blood work showed that I was positive for a recent infection of Cytomegalovirus, or CMV.
The doctor said he was positive that CMV caused our baby’s abnormalities. We finally had a name for what had destroyed our baby’s brain. (It was also later confirmed via the results of the amniocentesis). We met with a pediatric neurologist who told us about what we could expect our son’s life to be like – severely disabled and in pain, with grand mal seizures that would put his life continually at risk. After a grueling period of discussion and heartrending questions about our son, our older daughter, and the prognosis, we felt that we could not in good conscience put our dear boy through such pain.
However, at 26 weeks, we were just past the cut-off for ending a pregnancy under current NYS law (24 weeks). Our team of doctors at Mount Sinai put us in touch with a clinic in Albuquerque, NM, which reviewed our case and approved us for a termination for medical reasons.
Getting on that plane to NM was one of the hardest things I have ever had to do. I had to kiss my little girl goodbye, knowing that when we returned, I would have to tell her she wasn’t going to have a little brother after all. I felt vulnerable and exposed, going to a strange place, and it was hard to shake the feeling that I was doing something wrong or unseemly, let alone “illegal”, even though every doctor and expert we spoke with agreed with our decision.
I delivered my sweet, silent boy after a three hour labor. My husband was forced to wait in the waiting room because abortion clinics have to maintain patient safety and privacy by only having patients in the l&d space. The doctors were kind and sensitive but it was incredibly difficult and emotionally devastating.
We were the unluckiest parents to have this happen to us, but we are not alone in this. I so
Appreciate the others on these boards who have reached out with kind words and support. Maybe someone will read this story in a time of crisis and be helped by it.