Carter's Story

Our first feature Carter, was born with spina bifida myelomeningocele. Carter was born at thirty-three weeks and four days old as the youngest of three children. At twenty-four weeks in utero, he had a successful surgery to decrease his enlarged ventricles and reverse his Chiari 2 Malformation.  
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Carter grows, learns, and plays like any young child. His family lovingly captures and shares his experiences on their Instagram account: Carter’s Spina Bifida Journey.
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Have you experienced any moments where you felt judged or misunderstood as a parent of a child with spina bifida, and how did you overcome them?
Thankfully, I don’t feel that we have ever been judged or misunderstood, I do notice a lot more people watching when we are out and Carter is in his wheelchair but I would never say they are doing it in a judgemental way. 

Are there specific resources, services, or community supports you wish were more readily available to families like yours?
Carter and I have been very thankful for support from community groups and SBHS family groups that were right there when first diagnosed. I do wish however I reached out that little bit sooner to help with his diagnosis period. 

What are some of Carter’s milestones or achievements you’re most proud of?
Carter was very slow with ‘typical’ baby milestones, he didn’t learn to sit up unaided until after 1 which was such a big achievement. Recently he has been working on pulling himself to standing and then sitting down, something we never thought he’d be able to do! I feel when Carter meets any milestone however small we celebrate it because it shows how far he’s come. 

What advice would you give to a parent who has just received a spina bifida diagnosis for their child?
Spina bifida is like a snowflake; every single child is affected differently but it does not define them. They thrive in their own way and everything is manageable. Reach out and speak to people around you who can help with grieving the diagnosis. Diagnosis day is the worst day ever, but it always gets better.
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What do you wish more people knew about the daily experiences of families living with Spina Bifida?
We’ve been very fortunate that Carter currently doesn’t need much more care than any other child. He needs to be catheterised 3-4 times a day and needs regular medication to help relax his bladder and make his stools looser and easier to pass. But he plays just as well as his brother and sister and finds his own way of doing things, he loves running around playing in his wheelchair, and joining in like any child would.

Visit  Carter’s Spina Bifida Journey to view more about the family’s experiences with birth defects.

Spina Bifida is like a snowflake; every single child is affected differently but it does not define them.