At what point does “quality of life” kick in? And at what point are you as a parent taking on more than you can handle? This is really the big question for everyone who has faced this issue of having more children after having a child with some kind of congenital anomaly.

When a prenatal diagnosis of myelomeningocele is made, doctors often recommend that the parents abort because the child will be too much of a burden and have no quality of life- maybe even be a vegetable. (By the way, the whole “vegetable” thing is completely untrue unless the baby has other defects that are incompatible with life. Most individuals with myelomeningocele have average mental function and can lead active lives with adaptive devices. The whole “vegetable” thing is a holdover from when the medical community discouraged providing any care for babies born with any form of spina bifida because they were believed to be hopeless cases. It’s only in the last thirty years or so that our enlightened medical practitioners have decided that children with spina bifida have a right to live.) My son isn’t a vegetable. If we’re going to start comparing him to food, he’d be an energy drink, bright and bubbly with a jolt that will leave you exhausted if you overdo it.

So let’s talk about what quality of life even means. To the parent whose baby has been diagnosed with myelomeningocele, quality of life is presented as full use of the limbs, bowel and bladder and not having hydrocephalus. If that’s quality of life then why are so many people who have full use of their bodies and are free from hydrocephalus so miserable? On the other side, why did Christopher Reeve keep living life as a quadriplegic? I personally think a lot of the issue of “quality of life” is actually wrapped up in us not wanting to deal with the unique challenges of disabled individuals.

I used to dodge the “what about having another child” question by saying that we only had a 2-5% chance of having another baby with myelomeningocele. It’s not like we were both carriers for a genetic disorder and had a 1 in 4 chance with every baby of the condition recurring. But then I heard about a new program at the university I went to. One of the dance education students had developed a program for teaching ballroom dance to individuals with special needs. She was inspired because she has a brother and two sisters with Fragile X Syndrome, a genetic condition that can cause mental and intellectual impairments and autistic  behaviors. That gave me pause. Apparently the parents had decided to have more children despite the genetic condition, and they were very loving and supportive of all their children.

Does any child who is loved unconditionally really have a quality of life so terrible that they shouldn’t be born? Many children with “perfect” bodies aren’t as lucky to be welcomed with that kind of love. On the other hand, if you knew that you and your spouse were both carriers for something like cystic fibrosis, would you choose to give a child a body with impairments that would one day take their life? (And then on the other hand, individuals with cystic fibrosis are living longer than ever before, especially at some of the best cystic fibrosis centers in the country.) There is no one-size fits all answer for everyone on this very personal subject.

We’ve just had our third child and yes, she and her second oldest brother are both free from any neural tube defect. This is probably not our last baby. Every time we have had another child we have found ourselves in a strange place where we would rather not have another with myelomeningocele, but if we did, we know what that would mean and would welcome that child into our family.

We can’t say that we wish our oldest had been born without it. There is a certain beauty that comes in raising a child who needs a different approach. Seeing our son walk and start to get potty trained are exhilarating victories because we were told he would never be able to do those things at all. We’ve worked hard and come up with some unique strategies to make those things happen. We’re very proud of who he is and what he has done.  It’s a different kind of accomplishment than it has been with our second. It’s a certain kind of victory that most people will never know.

The most frustrating thing is that we have encountered so many doctors and specialists who don’t see it this way and believe that our son’s condition and his life are a tragedy. As a mother of a child with a birth defect, I wish more people, especially medical personnel understood that quality of life is more than a normally functioning body.

 

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