Is having a special needs child worse than death?
Apparently for some parents, it is. A number of couples are now suing their obstetricians for not informing them about testing procedures available during their pregnancy, which would have exposed fetal conditions such as spina bifida. In other words, they lost the opportunity to make an informed choice about continuing the pregnancy. According to the law in many states, physicians must inform expectant couples of all their prenatal testing options.
Personally, I don’t blame parents for wanting to know about the health of their unborn child. And prenatal testing can provide the opportunity for in-utero procedures that may help the fetus. However, in most cases, genetic conditions and birth defects cannot be treated in the womb. So what will parents do with the knowledge that their unborn child has a lifelong disability? Perhaps they’ll be able to mentally prepare for the experience. Or, more disturbingly, maybe they would choose to abort the fetus. Some parents are saying that they should have the right to make that decision.
“If Only We Had Known…”
One couple, Dan and Colleen Fraker of California, are suing their obstetrician. They have a beautiful two-year-old daughter who looks like a little porcelain doll. But she has spina bifida, a condition where the spine does not fuse properly during fetal development. Their daughter is completely paralyzed below her knees, and partially paralyzed from the waist down. The little girl has urinary difficulties and must use a walker or wheelchair to move about.
The Frakers say that their doctor did not make them aware of available tests which would have exposed their daughter’s disability prior to her birth. When asked what they would have done if they’d had the information, Colleen Fraker replied to PEOPLE magazine, “I don’t know if I can answer that, just because of the fact she’s here now.” (Precious Child, Impossible Choice, PEOPLE, Bob Meadows/Lorna Grisby, May 15, 2006.)
This troubles me, to say the least. The mother of this precious two-year-old “doesn’t know” if she would have opted to abort her child? And she’s suing because she lost the option? The couple insists that they love their daughter dearly.
The issue has become a heated debate. Should parents have the right to abort a fetus that isn’t perfect? And if their child is born with a disability, should parents be able to sue doctors for not giving them the chance to find out beforehand?
As the mother of a wonderful, brilliant, fascinating child with a disability, I would ask, what about the right of the child to live? It’s the same festering Roe v. Wade argument that still rages on.
Perfection is Not a Requirement for Humanity
In my view, perfection has never been a requirement for qualifying as a human being. And what shall we do with children who become handicapped after birth, like Brooke Ellison, who became a quadriplegic when she was struck by a car at the age of eleven, and is now running for the New York State Senate? Should those kids be done away with? Shipped to Siberia? Shunned? Does my son with autism not deserve to be a resident of this planet, because of his developmental delays?
Aren’t we all susceptible to disability at any time? We’re all prone to illness, accidents, frailties, and failings. Isn’t imperfection a normal part of the human experience?
I’m wondering what the real problem is for these parents. Is it the inconvenience, trouble, time, and effort it takes to raise a special kid? Are they ashamed? It’s just too difficult? Too expensive? Where is their strength, courage, and resolve? What happened to the ability to love our children unconditionally?
Parenting Requires Courage and Character
I’m not saying that raising a disabled child isn’t very hard work. I’m not suggesting there aren’t moments of sheer exhaustion, frustration, and emotion. But life is a gift. A child doesn’t have to speak, walk, behave, or understand things perfectly to have joy in the experience of being alive. I would hope that as parents, we have not become lazy and intolerant. I hope that we have not lost the courage to face whatever challenges parenting may bring. And I hope that fear of inconvenience doesn’t rob us, ultimately, of character.
