At 19 weeks I went to my routine anatomy ultrasound with my husband and parents in tow. This was the extra special appointment where we were about to find out if our third child was a boy or a girl. Our excitement was through the roof when we found out we were going to have another son, as soon as the ultrasound tech was done she told us we would meet with the doctor. At this point my parents left the office with their excitement, trying not to spill the beans. My doctor came in and immediately told us they believed our son had some abnormalities, club foot and water on the brain. She told us not to worry, her dear friend a perinatologist across the hall was waiting for us to come take a better look on a more high definition ultrasound. She said no more and we were rushed across the hall to another doctors office. The staff was almost frantically getting our information and telling us to remain calm, was there anything I needed...at this point I think they were the ones worried, I felt clueless and surprisingly wasn’t worried. I had two other healthy children, how could anything be wrong with this child? Well an hour later after a very long ultrasound we met with our genetic counselor and the doctor who told us that our son had Spina Bifida but the worst form Myelomeningocele. Our son had a hole in his spine that was pulling his spinal cord down and out into a sack along with cerebral spinal fluid causing his cerebellum to be pulled down (Arnold Chiari Malformation) which in turn starts build up of fluid on the brain. We were also told he had club feet which is often associated with Spina Bifida, that seemed like the easiest diagnosis compared to the Spina Bifida itself. We were in a total whirlwind and didn’t even know what to ask but “How do we fix this? How do we save our baby from having brain damage or even possibly dying?” That’s when we were given THREE options.
1. Termination, because it’s going to be a long road for the rest of this child’s and your life. Some people just can’t handle it, or so they think.
2. Wait until he is born, we will deliver him here and transport him to Atlanta to have closure surgery on his spine, with this option they have to watch us closely the remainder of the pregnancy to make sure the baby makes it and the fluid on the brain isn’t building up too much. He will more than likely also need a shunt placed after closure surgery to drain the cerebral spinal fluid. He could have severe brain damage. He will never walk, he will be in a wheel chair.
3. “Fetal surgery”....umm excuse me, fetal what?! They told us there has been a study done on it, it’s no longer in testing phases as they had quit half way through because of the amazing results they got from it. Not everyone gets to have this option done, there is a particular criteria you have to qualify for. If we did qualify they would do this procedure between 23 to 26 weeks gestation. I would be cut open, my uterus taken out and opened exposing only the babies back to where they could close his spine. They would put him back, seal everything and we would remain on bedrest until an enduction at 37 weeks. With this study it has shown great results in reversing the Arnold Chiari Malformation, the percentage of needing a shunt changes pretty drastically, however he still may never walk and there is always the chance that he won’t make it.
As you could probably have already guessed we decided to go forth with a consultation for Fetal Surgery, at 22 weeks my husband and I flew to Philadelphia to meet with some of the amazing pioneers of fetal surgery at The Children’s Hospital of Philadelphia (CHOP). We were approved and had fetal surgery the end of that same week. I relocated to Philadelphia from Savannah, GA for the remainer of my pregnancy having to leave behind my other two children and husband for four months. It was the toughest thing I’ve ever went through, I was emotionally and physically the worst I had ever felt in my life.
Our baby boy stayed inside until 34 weeks when I was taken for an emergency csection due to my amniotic fluid leaking out of my uteran incision site leaving him with hardly any fluid and great medical risks for him. We named him Luke, our little warrior. He came out screaming showing us he had strong lungs but they still needed a good bit of support. Our NICU stay was a month long as we worked on getting him to breathe on his own and to work him off of a feeding tube. I was able to stay at the Ronald McDonald House of Philadelphia while going back and forth to the hospital every day to see him. While there I was able to meet other moms who had children with special needs born at CHOP and we all lifted one another up and gave each other support when needed. I made so many lifelong friendships with other moms of children who had Spina Bifida, Congenital Diaphramic Hernia, Conjoined Twins, you name it.. I have a sweet boy who has conquered so many obstacles already in his short six months of life and counting all thanks to the doctors, nurses and staff at CHOP for saving my sons life.
Please share for awareness as statistics show 2/3 of babies diagnosed with Spina Bifida are aborted. We chose life, we had faith, we did research, we trusted that he could live a pretty “normal” life. There is nothing stopping this happy baby.