alt Hacker NewsThis is amazing to see. Spina Bifida is tough as it can range anywhere from “wheelchair bound and substantial intellectual disability” to “has a hard time with potty training”, and you won’t really know until your child has been born.
My daughter is seven now and was born with spina bifida and it’s been a long journey full of pain, but also joy. The first nine months she had breath holding any time she’d get upset (which for a baby is all the time) so she was simultaneously the healthiest and least healthy baby in the NICU.
She’s wheelchair bound, but intellectually very sharp. Getting her a spinal shunt a few weeks after birth helped alleviate spinal fluid pressure in her brain, although it elevates scenarios of “kid has an headache” to “maybe we need to go to the ER at 3am in the worst snowstorm of the season”, but she’s extremely sociable and a light to everyone that meets her.
I’m glad work is being done that can mitigate this and improve quality of life for these children. She keeps asking me when she’ll get her robot legs and we tell her they have to test it out on adults first to make sure it’s safe! Exciting times for people with physical disabilities.
Thanks for sharing about your daughter. It's good to hear from other parents dealing with it. My daughter with spina bifida is only 18 months. It's early of course, but so far she's right on track cognitively and socially. I expect she'll be in a wheelchair full time, but don't know for sure yet. She's also just the most joyful, loving, social, happy toddler.
I know what you mean about elevating otherwise normal kid illness. She had her first shunt failure in January. It was pretty stressful going from "hmm, she's fussy" to surgery within less than 24 hours. But she was back to her happy self with hours of the surgery too, which was a pretty stark indicator of how much the shunt is doing for her.