Our IVF Miracle became a Tragedy

Diagnosis: Agenesis of the Corpus Callosum, Hydrocephalus

By Caitlyn's Mom

My husband and I had been trying to get pregnant for four years and finally did so on our first attempt with in vitro fertilization. We were so excited and thrilled that we decided to tell everyone! My first trimester went well: I had a little nausea in the evening for a couple of days but that was it. I had ultrasounds every week up until 12 weeks and then I was released from the fertility clinic to go back to my OB because everything looked great. My two visits with my OB were great and my AFP test came back negative.

I had wanted a Level III ultrasound because I wanted to see my baby's face in 3D. My OB arranged it with the top doctor at the University of Pennsylvania. The ultrasound was done at 20 weeks. My husband and I were so excited to find out what we were having that day. Nothing could have prepared me for the shocking news I was about to hear. The doctor told us our baby had severe hydrocephalus, agenesis of the corpus callosum and an abnormally small cerebellum. We were told if she made it to term, she could be blind, paralyzed, and confined to a wheelchair, with an IQ less than 60 or lower. He recommended that we consider terminating the pregnancy. I cried and cried and cried. Our beloved baby girl we wanted so much and had already fallen in love with had serious life threatening problems. A second opinion confirmed what our original doctor had diagnosed.

We ended up having a D&E at 23 weeks because I couldn't hold my baby in my arms and watch her die. I'm not that strong. She simply went to sleep when I did and felt no pain at all. We got photos of her from the second opinion ultrasound that shows her beautiful little face, which is just how I want to remember her. We were able to get her ashes, which provides some comfort knowing she is home with us. The hardest part was feeling her kick me as I walked into the hospital.

After all that, all my tests including the amnio and blood tests came back negative. Considering there is no history of any anomalies on both sides and that my husband and I were the only couple on both sides of the family to go through IVF, we've deduced that the IVF was the culprit. My husband and I will try again on our own: If I'm meant to have a child, it will happen the natural way.

Mothers tell their stories...

I told her how sorry I was and that I loved her and did not want her to suffer. I would rather suffer every day for the rest of my life than to allow her to suffer one moment in life.

~Mom of an Angel

Everything was going great. As already having two "normal" pregnancies under my belt, I felt confident. I knew there was always that chance of hearing bad news but I said "no, not me, not our baby."

~A Heartbroken Mother

We felt that if our daughter had been in a car accident and was on life support with the same internal injuries, we would not keep her on life support and let her suffer. This child deserved the same dignity."

~ A grieving mom

I initially thought I would "be brave" and continue my pregnancy. But I came to realize that ultimately it wasn't about how strong I could be, how deeply I wanted this baby or what important lessons he could teach me. It was about what he would experience in his short life. Given his diagnosis, he would have known only suffering. As his mother, I couldn't allow that to happen.

~ A mother at peace

It was our ignorance for believing that all pregnancies led to a healthy baby. It was my arrogance for believing that since I had the best medical care, took prenatal vitamins even before and during my pregnancy, never took drugs, never smoked cigarettes and drank about half a glass of wine a year, that our baby would be safe.

~A bereaved mother

A mother will stop at nothing, including her own hurt, both mentally and physically, to protect her child.

~Brokenhearted Mother