Diagnosis: Agenesis of the Corpus Callosum
For us, My angel Cole’s story started when my alpha-fetal protein came back elevated. We were told there are false positives all the time, but we were still advised to see a specialist. We scheduled our 18-week ultrasound with a specialist in Denver, Dr. Henry. We like surprises so we chose not to find out the sex until he/she was born, no matter what.
It was during our ultrasound that our nightmare began. As the ultrasound technician was “trying to get a good picture of the brain” she said she needed to have Dr. Henry come in to talk to us. The first words out of my husband’s mouth were “holy shit, this is bad.” I am a pharmacist and my husband is a physician and has seen his share of ultrasounds. When Dr. Henry and the ultrasound technician returned they explained to us that our baby had a massive inter-hemispheric cyst separating the 2 halves of his brain, encompassing the entire top and back portion of his skull cavity. He had Agenesis of the Corpus Callosum as a result of the cyst. His hands were also in such a position to indicate severe neurological deficit.
Immediately the doctor was trying to discuss termination while performing the amniocentesis. In shock that our baby, the sibling-to-be for our then 19-month-old daughter, had something wrong, fatally wrong with it. We told him we needed to do some research on what to do. He scheduled me to get a fetal MRI to get a better look at what the anomalies were and their severity. However, in his 20 years of practicing, he had never seen these anomalies at this magnitude, and together at once.
In hysterics I called my good friend whom was working at Loma Linda University Medical Center as a pediatric neurosurgeon to see if she could give us any guidance. She told us to wait for the fetal MRI results and that the ultrasounds aren’t always accurate. We began our own research to see what this baby’s chances were. We still wanted to keep the baby’s sex a surprise, no mater what. What type of support would it need if it did survive, if we chose to carry it to term; if it would even make it that far. These were all questions that no one had the answers to.
Ironically one of the first times I felt our baby move was during the fetal MRI. How could something be so wrong with our precious baby if it was moving? Any hopes that the Denver fetal board and my friend in California would have good news after the results of the fetal MRI came back, were crushed. Not only did he have the cyst but his eyes were wide set, his ears were mal-placed, he had an elevated palate, the cyst was connected to his ventricles causing ventriculomegaly (enlarged ventricles), and his hands were in a bent formation indicating a neurological defect.
My friend in California consulted with a team of physicians that she worked with and her response was “I really wish I had good news – this is bad.” The Fetal Board in Denver came to the same conclusions – on a scale of 1 to 10 (10 being the worst possible scenario) this was a 9. We were told if he were to survive he would probably be blind, deaf, possibly mute, not able to walk, and would most likely suffer from seizures. We also later found out he also had an enlarged heart. Could they really be talking about MY BABY? We were so excited to love this baby and give our daughter a sibling.
After many, many tears shed and what-ifs played out in our head we made the heartbreaking choice to end the pregnancy. We were both raised catholic; this was NEVER a decision we EVER though we would need to make.
After speaking to a doctor who said he would be able to do an induction, we made arrangements for our daughter to be taken care of during what was the worst 24 hours of our lives. Cole was kicking like crazy on the way to the hospital. Was this a sign from him that we were making the wrong decision? That was our biggest fear, that I would deliver a completely healthy, normal looking baby. Yes, I chose to deliver my baby. We wanted to see and hold my precious son, spend as much time with him as we were allowed.
I received an epidural after the back labor began after getting pumped full of Cytotec (pregnancy category X – an abortifactant). On August 2, 2006 at 9:46 am the doctor announced – “it’s a BOY”. A moment of joy turned immediately to pain. All I could keep saying was “I’m sorry.” My wonderful nurse said I shouldn’t be sorry and that he will only know our love.
I quickly held him close, along with my husband’s hand continuously telling him how much we love him. Cole then reached both arms up to the sky. Shortly after that was his last breath. He lived for 9 minutes; weighing 1 pound exactly and measuring 10 inches long. His globoid shaped head, enlarged by his cyst may have been scary looking to some but he was our baby—beautiful. And I miss him.