Hi y'all. My name is Erin, and I have a son with Spina Bifida.
First, apologies. I was supposed to post this yesterday and forgot to, so here it is, a day late. In the future, I'll be posting on Wednesdays.
Over on my blog, Tear & Mend, I'm writing a series on understanding the basics of Spina Bifida. I have a lot of friends and family members that read the blog that are not familiar with a lot of what I talk about. It's my way to advocate for our little ones and to help spread awareness that yes this is a BIG DEAL, but no it's NOT THE END OF THE WORLD.
So, here we go. I know a lot of you probably already know a lot of this, but I'll be getting into more specific areas in the future. For anyone reading that has just found out their child or loved one will be born with Spina Bifida, I think this is probably a good place to start.
Understanding Spina Bifida: The basics.
Spina Bifida is a Neural Tube Defect (NTD). The Neural Tube normally develops, folds inward and closes around the 28th day after conception. In babies with Spina Bifida, the tube fails to close correctly. This results in one of three versions of Spina Bifida (and a picture animation!):
1. Occulta: The most mild form of Spina Bifida. Although the NT does not close completely, the only evidence is usually a gap in the vertebrae that usually remains undetected unless the person has an x-ray or other exam of their back that reveals the defect. Some people have a small dimple or hairy patch on the skin where the defect is located. The cord and nerves are usually fine and no treatment is needed.
2. Meningocele: This is the rarest form of Spina Bifida. The NT does not close completely, and the membranes that protect the spinal cord protrude out of the back, forming the cyst that does need to be removed surgically very soon after birth (24-48 hours). Once the cyst is removed, prognosis is excellent for normal development because no nerves were exposed, and thus remain undamaged.
3. Myelomeningocele: This is the most severe, and I believe most common, form of Spina Bifida. In this case, the membranes and nerves protrude out of the back, and into the cyst. Babies have to have surgery very soon after birth because there is a high chance of infection (including meningitis). Because the nerves have been exposed to fluid and other matter in the cyst, and because they have to be touched when surgically placed back in the back, there is usually some degree of leg paralysis, bowel and bladder problems. (More on that later.)
Pictures are better than words.
So there you have it. Some SB basics. Donovan was actually prenatally diagnosed as having Meningocele. When looking at the cyst on an ultrasound there is white matter and black matter. Black matter represents empty space or fluid, where the white matter is something solid such as skin, bones, nerves, etc. So, Donovan had a sack that was full of black matter. That was good news! We were happy that if he was going to have SB, at least it was this kind.
After the initial diagnosis (made by my perinatologist), we met with Donovan’s Neurosurgeon who said he was optimistic, but did warn us that we don’t know 100% until he is born and they are in surgery. The nerves can actually grow against the wall of the cyst, making them invisible on the ultrasound. So, we were aware that the prognosis could change. And sure enough, it did.
Donovan’s closure was performed the day after he was born, February 6th. After the surgery, we met with the Neuro who said that there were some nerves plastered along the wall of the cyst. Not many, but some. So yes, it was Myelomeningocele.
His prognosis was still good for several reasons, but those will be discussed as I cover other topics. But that is all for today. I hope the information helps you in understanding more about this birth defect, which is one of the most common, affecting more than 1,500 (live birth) babies in the United States, every year.