Raising A Child With Spina Bifida, Hydrocephalus, Paralysis, Tracheostomy & Myelomeningocele
This is a blog post for parents who just found out their child was diagnosed with Myelomeningocele - one of the most severe forms of Spina Bifida, where the spinal chord in utero (during pregnancy) does not form properly, leaving a hole where the spinal chord comes out somewhere along the back.
The side effects can are, at minimum, paralysis some where from the waist down. Often times, somewhere around 80% of the time, your child will also be born with Chiari Malformation II and Hydrocephalus, where the brain is squished up and down. Their brainstem and Cerebelum is pushed down into the neck, causing all sorts of nervous system problems such as weak arm movements, trouble breathing, sleep apnea. Our son, Josiah, who is now 2 years old, also requires a trach, g-tube for feeding, and ventilator during the night due to central sleep apnea. Almost everything a child can get due to Spina Bifida is what Josiah has.
Most parents in California abort their children when they hear their child has Spina Bifida - typically discovered at the mid-pregnancy check up. My wife, Melinda, did her mid-pregnancy check-up at week 18 after we had just come back from a trip to Seattle assuming everything was fine.
Of course, the news was devastating when we first heard that Josiah had severe swelling in the brain, paralysis from the waste down, and a large bulge on his lower back.
After having our first son, Jayden, who is now 4 years old, we've learn how much of a joy it is to have a young child. And our expectations for our 2nd son were to be something similar. Imagining not having a life without our 2nd son is a completely devastating idea. Abortion was not an option, even though we were terrified of what could happen going forward.