My husband and I were scheduled to drive to Mt. Juliet, Tennessee at a doctors office called Tennessee Maternal Fetal Medicine the very next day. I now was considered high risk and would be getting an extensive ultrasound to confirm the diagnosis of Spina Bifida. The worst part of this scary experience was I was all alone. Remember the Covid rules? Masks and no one could accompany you to your appointments. My husband had to sit in his truck and wait while I went through all the testing. Can you imagine how he was feeling? He wasn’t able to be there with me to hold my hand and see his baby on the screen. The ultrasound took a while and I was getting very tired and anxious. Next came the results. I was taken to this tiny room and told to sit in a chair and to wait for the doctor to come in and discuss everything. I waited a while and she came in. She told me I could call my husband and put him on speaker for him to hear. Wow! Think about that. He heard the crushing news about his babies birth defect on a phone call! The doctor went on to explain to us what this specific birth defect was. Spina Bifida is a birth defect in which an area of the spinal column doesn’t form properly, leaving a section of the spinal cord and spinal nerves exposed through an opening in the back. So our sweet babies spine was open? She went on to explain how the neural tube starts to form in early pregnancy and closes around four weeks after conception. In spina bifida, the neural tube doesn’t close completely, which can lead to defects in the spine and spinal cord.  So again I said, “You mean my babies spine is just opened?” Why did this happen? Is it my age? She said it is one of those birth defeats that they don’t know why it happens. No it isn’t my age. Some research says maybe it is because the mother did not take enough folic acid. But she assured me it is nothing I have done. She also told us that our baby had the most severe form of Spina Bifida called Myelomeningocele.(my•e•lo•me•nin•go•cele) (MMC). It is The most common and serious form of spina bifida in which part of the spinal cord and surrounding nerves push through the open bones (vertebrae) in the spine and protrude from the fetus’ back. Usually, the exposed spinal cord and nerves are contained in a sac that is exposed to amniotic fluid. Continuous bathing of the fragile developing spinal cord in amniotic fluid over the course of gestation is thought to result in progressive neurologic injury. So in more simpler terms; the babies open spine and all of her nerves were being washed by my amniotic fluid which is not good.

The doctor wasn’t finished with negative news just yet. She also told us that our baby has something called Hydrocephalus. This is a condition where there is too much cerebrospinal fluid (CSF) in or around the brain, putting harmful pressure on the brain tissue.  Hydrocephalus is the buildup of fluid in cavities called ventricles deep within the brain. The excess fluid increases the size of the ventricles and puts pressure on the brain. The reason our baby has this “water on her brain” is because she ALSO has a growth abnormality where her brain tissue in the lower back of her skull extends into her spinal canal (the base of your skull). Our baby has something called Chiari Malformation Type 2. So this means the babies brain stem and cerebellum are pushing through her foramen magnum, which is the opening in the skull where the spinal canal joins. We learned that the hindbrain is what they call BOTH the brain stem and cerebellum. They also were telling us that all the pushing is called hindbrain herniation. The babies Hindbrain herniation is blocking the cerebrospinal fluid circulation, which is why she has hydrocephalus -the buildup of fluid in her brain. To treat hydrocephalus, a thin tube can be placed into the brain’s ventricles to drain fluid.

Finally, I was told that I would be now going to a high risk doctor and having an Amniocentesis to check for any more fetal abnormalities and really confirm her diagnosis of Spina Bifida. My husband and I drove back to Spring Hill and we immediately went over to my sisters house to give my family all of the devastating news.