by Katelyn Bush
Happy Spina Bifida Awareness month! My daughter Pearl has the most severe form of spina bifida called myelomeningocele. We found out at 20 weeks pregnant and had an in-utero surgery at 24 weeks to close the hole in her back. She was born shortly after at 28-weeks making her incredibly premature, weighing in at 2 pounds 10 ounces. Spina bifida is a neural tube defect and is the most common birth defect. The nerves that innervate Pearls legs, bowel and bladder are damaged thus causing her to do things a little differently. She had a shunt placed in her brain at 8 months to combat hydrocephalus, water/swelling on the brain, a common experience with spina bifida.
Many people whose babies are diagnosed with spina bifida in utero will choose to terminate the pregnancy. My goal is to educate on the possibilities of what life can look like with this diagnosis, normalize disability and empower my daughter to live her best life with the cards she’s been dealt. I know the world is a better place because pearl is in it. And what if there were more Pearls in the world…
Normalizing disability is something I strive to bring to the table. It’s possible to still have an incredibly high quality of life, and I like to show that. We have challenges, yes, but don’t all families? For the most part Pearl is a typical four-year old: whiney, constantly needs snacks, picks on her sister, doesn’t eat what I cook…those are not unique challenges I face as a mom! She’s a kid. She’s can be difficult. She is also the greatest joy in my life.
Pearl is funny, sassy, loves to try new things and go places, loves to dance, has a serious sweet tooth, is terrified of dogs, obsessed with her grandparents, is a teacher’s pet, recently learned how to swing on the swings backwards like on her belly (she thinks this is magical). When Pearl grows up, she wants to be a “babysitter”. She’s a child. She is not a diagnosis.
Spina bifida is a part of her and our family, and at the same time Pearl is a vibrant hilarious little girl full of life. We are blessed beyond measure to have her. So, this month we celebrate spina bifida because I have a gorgeous Pearl 💛.
Dear friends, I’ll always remember, as a Make-A-Wish volunteer, meeting Wish kids for the first time and learning more about their hopes and dreams and wishes. I’ll always remember, as a Make-A-Wish employee, collaborating with a team to make sure those wishes became a reality. I’ll always remember, as a teacher, working with Darryl and […]
A diagnosis of severe hydrocephalus at 20 weeks gestation meant Jackson’s parents faced many unknowns before he was born. Hydrocephalus is a condition where there is an excessive buildup of fluid inside the brain. Critical medical decisions would be necessary immediately after his birth. Jackson made his entrance into the world in December of 2021. […]
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