36 Weeks and Counting

Nick and I are getting ready and now that we are in the final month it is becoming more of a reality. As many people already know our son has a birth defect called Spina Bifida. Nick and I found out on January 2nd and were quite surprised by the news. We were a bit reluctant to share the information at first because we wanted to learn as much as possible before we told so we could answer questions as they came up. At this point we have learned all we can before he is born. We are still extremely excited and feel very blessed to be having this child. To give a little background on what Spina Bifida is, it is a condition where at about 28 days after conception the spinal column closes, in this case his did not close all of the way. Luckily from what they see his lesion is very low and small – in the Sacral region, which is near the tail bone. So what does this mean? It means that within 24-36 hours after birth (we will be having a c-section) he will go into surgery to have his lesion closed. The reason they close it so soon after birth is because they do not want his spinal column to become infected. Another common condition (from what we are told about 80% have it) with Spina Bifida is hydrocephalus. It essentially means that the fluid in his brain does not circulate properly and it can lead to “water on the brain.” At this point in-utero it is not a problem because the fluid exits through the opening in his back. He does have enlarged ventricles, which they watch but nothing to be too concerned with yet. Once they close his back, they will start to watch his head to see if it enlarges. If it does they will put a shunt in to control this condition. The shunt goes in the brain and has a tube that drains the excess fluid into the abdomen. From what they say this should not have any effect on his intelligence. Nick and I have been told that our son will be in the NICU for two to three weeks after birth. It could be less and it could be more because every child is different, so time will tell. We have met with the Neurosurgeon, Neonatologist, and Neurologist so far and all seem to be very good. The Neurosurgeon will be doing his initial closure surgery as well as the shunt surgery if needed. We liked him a lot. He did some of his training in Philadelphia at the Children’s Hospital, which is one of the best in the country for this condition. The Neonatologist will be taking care of him while he is in the NICU and the Neurologist will come into the picture later in life. We will also be starting with a physical therapist and urologist once he is born. I think that is about all for now. Nick and I will be keeping this updated from now until after the baby is born, we think it will be a great way to share our journey. Let us know if you have any questions. Thank you all for your love and support.