Fighting For Our Baby Lewis Miracle

Hi everyone! As most of you may know, the Lewis family is asking for all of the love, support, and prayers you all could provide. I will share a glimpse of the start of this journey with you all, directly from Adrianna herself. I ask that we all help raise the family with all of your love and support, and show them they are not in this fight alone! Not only are they enduring the hardest fight of their life, the financial weight this will have will be astronomical. Here’s the start of their brave journey:

On September 27, 2022 we went in for our 20 week anatomy scan just excited to see our baby boy. After the ultrasound they pulled us back to the room and told us that our son had a gap in his spine which means he is likely to have a birth defect called Spina Bifida. (Spina Bifida is a birth defect that occurs within the first 3 to 4 weeks of pregnancy when the spinal cord fails to develop or close properly) They then sent us to EVMS where they confirmed that he does have Spina Bifida and it’s the most severe type called Myelomeningocele (MMC). We also found out that both his feet are clubbed and he has fluid in his brain which is called Hydrocephalus. Both the clubbed feet and the Hydrocephalus are things that can occur with severe cases of Spina Bifida.

The doctors told us we had 3 options to choose from. Options # 1 would be termination because of the severity of Spina Bifida. He will most likely never walk without assistance or possibly even be paralyzed, there’s also the chance of him having little to no bladder control and having to have a permanent catheter and also because of him having the Hydrocephalus there could be neurological deficits and possibly surgery after birth for a shunt to drain the fluid and maybe even more surgeries after that in cases of infections. Also with the type of Spina Bifida he has there’s a chance of him having Chiari Malformation which could cause him to have breathing and swallowing problems.

Option #2 would be fetal surgery at Children’s Hospital of Philadelphia (CHOP) where they would do in utero surgery between 23 and 25 weeks and 6 days gestations to go in and try and repair his spinal column. Fetal surgery would be his best bet at a somewhat normal life. Doing the repair while in utero would hopefully lessen the chance at the more extreme deficits such as paralysis and surgery for a brain shunt. We have a 2 day evaluation scheduled with CHOP to run a bunch of test to make sure me and baby boy would both qualify for surgery. Having the fetal surgery means we would have to temporarily relocate to Philadelphia because I would need to be close to the hospital for weekly ultrasounds and I would be wheelchair bound for 6-8 weeks after surgery then on complete bed rest until I would give birth. Having this surgery means there’s a higher chance of him coming prematurely then a lot of nicu time. But if he doesn’t try to make his entrance early they would schedule my C - Section at 37 weeks. After he was born he would have to stay in the nicu for about 2-3 weeks depending on how he does. The surgery being repaired before he is born allows his spinal cords a chance to form properly and heal but there’s nothing that can be done for the damage already done to the cord and all of those nerves. Having the surgery the hope is that the Hydrocephalus will correct itself once the repair is done like most cases do but if not then he would have to have another surgery after he is born for a shunt to be put in.

Option #3 is to do surgery within his first few days after birth to repair his spinal column. Also because he has Hydrocephalus he would need to have another surgery to put a shunt in his brain to drain the excess fluid. This also means he would have to stay in the nicu and we won’t know for how long till it comes. This choice could help but is mostly done just to repair the sac that is holding his spinal column and nerves. With him having the damage to his spinal cord for a longer period of time it makes his chance of him having worsened deficits way higher then if the repair was done in utero.

Right now there are just a lot of unknowns and once we do our 2 day evaluation with CHOP we hope to have all our questions answered. There is no cure for Spina Bifida he will always have challenges. He will always be in and out of multiple doctors appointments and doing very little without help. This process has to happen very quickly and it’s all really scary. We never expected to ever have to go through something like this. We are just hoping the doctors are able to give us answers so that way we can make the best decision for our baby boy and for our our family. With any of these options we are looking at a lot of expensive cost wether it’s to pay our mortgage and utilities or to be able to pay all of these medical bills we will be facing. We are so thankful for the support system we have and are just taking it one day at a time.