Mallorie DeRuyter

First post: Oct 23, 2020 Latest post: Apr 21, 2021
On Friday October 9th, 2020 me and my husband Chris went in for our 20 week ultrasound for baby number 2.  We were so excited to see our baby and hear how things were progressing. But when the doctor walked into the room with a concerned look on her face and said "This is going to be a hard conversation to have" our hearts sank. She proceeded to tell us that our baby had Spina Bifida (or a neural tube defect).  For those of you that do not know what Spina Bifida is, it is a lifelong condition that happens very early in pregnancy and is really unknown why. During the formation of the spinal column at some point the vertebra do not close around the spinal cord and are left open. This condition and the outcomes to how it will affect babies life varies so much from person to person that they call it the snowflake disease, because no two kiddos are alike. We met with Maternal Fetal Medicine in Green Bay and were referred to Children's in Milwaukee to discuss our options further. Our two options being fetal surgery (while baby is still in mom) or post natal closure (done almost immediately after birth).  In the case of our baby the opening is located from L4 all the way down to the base of the spine. With this information it tells the doctors that there are possibilities of things like mobility issues, concerns with bowel/bladder function, and even hydrocephalus (water on the brain). They have no way of knowing for sure how baby will be affected until birth. 

With the information that we have been given from the specialists as well as the other families that I spoke with that have been in my shoes, we are opting for the fetal surgery option if we qualify. They do not do fetal surgery in Wisconsin so we are being referred down to Lurie's Children's Hospital in Chicago. Our first consultation is on 10/20/20 where I will have lots of testing done and just learn more about what to expect from the life of a child with Spina Bifida. If we qualify for surgery it has to be done around 26 weeks so that the baby is big enough and there is still time for some concerns to possibly be corrected. The surgery can potentially help correct some of the mobility concerns as well as eliminate the hydrocephalus. But of course these things are not a guarantee. Depending on how the surgery and recovery goes there is a chance that we may have to stay down there anywhere from 2 weeks or even up until the time of delivery. 

While we are down in Chicago for surgery we will be relying on our amazing families for help and support with our daughter Remi. Unfortunately due to COVID she would not be able to stay with us during recovery at the Ronald McDonald house.  It will be hard to be away from her for so long but we know that she will be well taken care of in our absence. 

Our journey will be a long one and we wanted to keep you all updated here in one place as we go. We truly appreciate all the prayers coming in as we wait and hope for the best with surgery and the arrival of our sweet baby.