(Spina Bifida, Meningocele)
Our son is a smart, silly ball of energy whose favorite subjects at school are library, computers, and recess, and who was born with a meningocele (a type of spina bifida). He had surgery to repair it in China when he was just a few months old. The effects of his spina bifida are negligible – he runs, jumps, swims, and climbs on the furniture like any other 7 year-old boy.
Spina bifida was not one of the medical conditions we initially felt confident parenting, but when we saw our son’s photo, we wanted to learn more about him. After consulting with a pediatrician, we felt we would be able to provide for his needs.
Our son was a baby, just learning to walk when we requested to be his parents and began our paper chase. During the long wait to travel, we educated ourselves more about spina bifida. One particularly difficult aspect of adopting a child with spina bifida was that since he was so young, we did not really know exactly to what extent his meningocele would effect him. We learned that spina bifida can have a very wide range of effects, from basically none to paralysis below the lesion. Most kiddos with spina bifida fall somewhere in between. Some have full mobility, some need some sort of bracing for walking, some need aids like a walker, and some use a wheelchair at least some of the time. Since the nerves that control bladder and bowel function are the lowest on the spinal cord, it is reasonable to anticipate the possibility of bowel and/or bladder involvement. Although not all children have bladder and/or bowel involvement, if they do, there is a very good chance that they can achieve "functional continence" through cathing and/or a bowel program.
Since Chinese medical reports do sometimes use the terms meningocele and myleomeningocele interchangeably, we could not be certain that our son even had a meningocele. The Chinese characters for the two words are very similar. Meningocele is usually less severe, and typically only involves the meninges, the covering of the spinal cord. Often there is little nerve involvement or damage. Myleomeningocele involves the nerves, so there is a greater chance of nerve damage. Hydrocephalus is sometimes associated with myleomeningocele, but not meningocele. There is a third type of spina bifida, lipomeningocele or lipomyleomeningocele, which also involves fatty tissue. It is usually less severe than myleomeningocele and more severe than meningocele. Usually, the lower the lesion is, the greater that person's functional abilities (since the nerves at and below the level of the lesion could be effected). But, we learned, far more important than word choice or diagnosis is just how the individual is functioning.
Something we have had to get used to is the fact that spina bifida is not something that is truly "fixed." It's something that has to be followed for life. Some children - but not all - will eventually require a detether surgery. Tethering of the spinal cord is when the spinal cord gets entrapped, by scar tissue, for instance. It can cause symptoms and a loss of function (because nerves get damaged). So we watch for things like feet turning in unusually, falling more, and loss of continence. Actually many children's spinal cords are tethered (our son's is), but neurosurgeons often prefer to wait to see if it causes problems.
We see a neurosurgeon, now every two years. We've also seen a urologist, but do not need to return. Specialists depend on the individual child's situation. Some neurosurgeons order MRIs every year, plus other testing (urodynamics), so depending on insurance coverage, co-pays could be an issue. We did go to physical therapy 1 - 2 times a month for a couple of years. Lots of kiddos go to a spina bifida clinic and see all their specialists in one place on the same day. Shriners Hospitals can be a good resource for spina bifida clinics.
Spina bifida can be a scary diagnosis and there are often many unknowns. But it can also be very manageable. We’re so glad we took that proverbial leap of faith!