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.
We had gone up to St. Louis on a Tuesday during my 36th week of pregnancy and scheduled my c-section at Barnes. Everything was going according to plan. I had started my maternity leave and was ready to start nesting and get ready for his arrival. Then I woke up that Friday morning and my water broke. I called my best friend to come pick me up and take me to the hospital because she was the closest one to me. We ended up with quite the room full of people at Cox. I had to wait there until the ambulance from St. Louis was able to get to Springfield to pick me up and take me to Barnes.
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.
Update 2024:
Although there have been many days that I don’t think about Spina Bifida, there are also many days where it consumes me. It has completely changed our outlook on everything. This world was not built for wheelchairs and accessibility. And it’s heartbreaking to have to deal with and navigate sometimes. I try to protect him as much as I can from feeling “different” or being left out, but it’s so hard sometimes. His wheelchair provides him with such a freeing and liberating feeling when he can use it without boundaries. But he isn’t always able to do the things he wants because of the environment around him, and I know that’s difficult for a 5 year old mind to comprehend.
Kendrick is now in first grade and loving life. He has started reading and loves to tell everyone how smart he is. We’re monitoring a few things with his health, but overall he’s doing really well. He’s got a new baby brother he absolutely adores. I’ve loved watching his role as big brother adjust since bringing home baby.
My hopes for the future are for things to just become easier for him as he gets older. He’s still learning how to navigate so many things in his wheelchair. I know there will always be struggles, but we’re on the journey to independence.
On Angels’ Wings has been such a blessing for us. They’ve been able to provide us with memories that we’ve never been able to capture before. When your life is full of a constant stream of medical bills, you don’t have the time, energy or extra money to be able to have pictures taken. On Angels’ Wings has taken that burden off of me. I’m so happy to have them capture our journey.
They’ve also given Kendrick so many opportunities to experience new things. This year, he threw the first pitch at a Springfield Cardinals game and the arranged for private entry for our family (and a few others) at Wild Animal Safari.
I’ve recommended OAW to families in the past and will continue to do so any chance I get. This organization is so special and provides such a wonderful service. They will always hold a special place in my heart. On top of this, they have so many other wonderful events for families. It’s so worth it.
