By Breanna Scott
Mommy to Kendrick
Spina Bifida
Our journey with Spina Bifida began at my anatomy scan while pregnant with our first child, Kendrick, in 2017. My OB noticed some abnormalities on my ultrasound and sent me to a local maternal fetal medicine doctor. While there, I got another ultrasound and an amniocentesis. Both confirmed that our baby has Spina Bifida. The next month and half were a huge blur and full of emotions. Within the next few weeks, we had two full days of doctors’ appointments set up in St. Louis with the Maternal Fetal Medicine team at Barnes. I had a multitude of tests done to see if we qualified for fetal surgery. In the end, we did not end up qualifying.
Everything that happened – every check up, every ultrasound, every emotion, EVERYTHING – was just full of unknown. Spina Bifida is known as a snowflake condition because no two cases are exactly alike. So we truly didn’t know what to expect until he was born. All we did know was that we’d have a baby that we would love and that’s all that mattered. It was scary, for sure, but after coming to terms with his diagnosis we knew that our goal was just to believe. Believe that everything would work out the way that it was supposed. Believe that our son would be a fighter and we’d fight for him until he was able to do so himself. Believe that he would be able to live a wonderful life no matter what.
It was an extremely long day. My water broke at around 8:30am on March 23, 2018, and I finally delivered my baby boy at 11:14pm that night. My husband stayed with him the entire time. The next few hours were a complete blur to me, and I don’t remember much. Not until about 10-11 hours later when they told me they were able to assemble our team to take Kendrick into surgery to repair his back. I was a mess. I knew this was going to happen, but I wasn’t prepared to let my baby – who was only 12 hours old, and I hadn’t even been able to hold yet – go back for a major surgery. Fortunately, he did amazingly. He was off of pain medicine before I was! And 12 days later we got to come home.
Kendrick is now 4. As time went on and as we became more educated, we were able to realize that he’s just a normal little boy. Can he use his legs the same his peers do? No, but that doesn’t change who he is. At this point, Spina Bifida isn’t even something we think about everyday. Our “normal” might not be the same as everyone else’s, but it just becomes part of the routine, and you don’t even think about it anymore.
He goes to preschool all day where I teach. He is primarily a wheelchair user. He’s so smart, funny, goofy and loving. I can’t believe how far he’s come since he was born. He got student of the month the first month of school! He’s made so many friends. I think he knows more people at the school than I do! He lights up every room he enters and everyone absolute adores him. I couldn’t ask for a better little boy to share this life with. Having a child with Spina Bifida has resulted in a change of mindset. As an educator, I had learned all about inclusion. But until you experience the need for it firsthand, it’s hard to truly grasp the meaning.
I didn’t hear about On Angels’ Wings until Kendrick was 3. So I decided to get his pictures done for his 4th birthday. With all of our medical bills, we had never done pictures on our own. On Angels’ Wings allowed us to have a special session with Kendrick and his sister to celebrate their birthdays. We’ve been able to do additional sessions with OAW, and I’m grateful they offer to continue capturing Kendrick’s journey.
My biggest hope for him for the future is that he is able to find success and be comfortable with who is. I’m sure as time goes on, things have the potential to get more difficult. But I hope that we are doing a good enough job now to help him have the confidence to not only navigate his future but to also come to us when he is having difficulties.
