Families That Inspire: Meet Carter
● By Brian O
By Marne Dekkers
What is Spina Bifida?
Spina Bifida is a birth defect that happens when the baby’s spine doesn’t close properly. It happens before birth while the baby is still developing in the womb. This opening in the spine exposes nerves and can cause varying degrees of paralysis, bowel and bladder issues, hydrocephalus (a build up of fluid within the brain), and other developmental delays.
When did you first find out about your son’s Spina Bifida diagnosis? How did you decide what to do next?
We found out that Carter would be born with Spina Bifida at his 19 week ultrasound. They could see the opening in his spine as well as spinal fluid that was collecting in the ventricles of his brain. We were scared and completely overwhelmed with a flood of medical terms and jargon. We learned everything we possibly could about Spina Bifida in the four months leading up to his birth. We learned he would face surgery to close his back soon after he was born, and he would also need a shunt in his brain to take care of the fluid in the ventricles.
What was your family's course of action?
To say our emotions were on overload is an understatement. There were so many unknowns that we couldn’t control. We relied heavily on our faith, as our friends and family lifted our baby and our family up in prayer. There is great power in prayer and we felt it everyday.
Before Carter was born, we got in touch with other families who had kids with Spina Bifida. Doing this gave us a lot of reassurance. After meeting these kids and their families, we learned quickly that these kids were much more like any other kid than not. Yes, they had some challenges and yes, some things were done differently, but they were kids first – bright, happy, fun-loving little kids who were loving life.
Are there any resources you would recommend?
In addition to meeting with other families that have kids with Spina Bifida, there are some great online resources such the Spina Bifida Association’s website. We also found it very informative to read blogs and CaringBridge sites of families with kids that had Spina Bifida. It’s amazing what parent support can do for you. Walking alongside someone in a similar journey and being able to support them as well as having them support us has been very helpful.
What role did your child's school/teachers play?
We started seeing the local school system’s Birth to Three program soon after Carter was born. They regularly evaluated his needs and implemented in-home therapies that would help him reach important developmental milestones. After he turned three, we started with the Early Childhood program where he attended preschool and received his therapies. We give so much credit to the people who implement these programs. Working with them in a partnership to do what’s best for Carter has always been key. We believe home and school working together will continue to be key as we transition into the school years with him.
What advice do you have for other parents of children with Spina Bifida?
Take things one day at a time and don't get too far ahead of yourselves. If you encounter setbacks, handle them and move on. As Carter’s parents, we’ve learned so much about what’s important in life. Our perspectives have changed for the better. Having a disability like Spina Bifida isn’t so much about what you can’t do. It’s more about finding the things that you can do and building on those things.
Is there anything else you'd like to add?
Having any kind of medical diagnosis can leave you feeling like you wear a label. Seeing beyond that label is important. Don't let a diagnosis limit you or your family. Spina Bifida will always be part of Carter’s story, part of our family’s story. But it isn’t the essence of the story. We are a family first. He is a little boy first, a boy with a spunky, fun-loving attitude who loves life. None of us knows where our life journey will lead, but it's certain that every day is a gift to live to its fullest.