Nathan and Cianna photo by Snapshot Sisters

Wednesday, July 28, 2010

"Wrongful" birth... ug.

Ug. I read this article this morning, about 2 families in Australia who are suing over the "wrongful birth" of their children who have Down Syndrome. Where to begin with this? I guess the punch to the gut is the idea that someone would think that the birth of a child like mine is wrong. I feel defensive, for myself, and for my child, my sweet, engaging, funny little boy, who can light up a room with his laugh and who certainly does not suffer with his disability.

I know that having a child with disabilities can be hard. A child like mine will have developmental delays, which become developmental disabilities as he gets older and it is clear that he will not "catch up". And, yes, health issues. And, no, he's not potty trained within the typical time frame. I guess the parental anger is understandable, part of the shock of the diagnosis, the knowledge that your child is not going to be able to do everything you had hoped, that there will be challenges. And in a litigious society, when we have anger, we look for someone to blame. If these parents blamed themselves, they couldn't very well sue their own cells for dividing improperly. So they are suing the hospitals for failing to discern the diagnosis in advance of birth, failing to give the parents the option of termination.
I believe in a the right of parents/mothers to terminate pregnancies if they decide that any child would be too much, or that a child with a specific condition would be too much for them to handle. If parents really feel this way, they should probably do some research and have a dialogue with their medical team about the incidence of specific disabilities, and about accuracy and risks of testing. The medical team does have an obligation here to provide the best care and testing available if testing is desired, and to provide good explanations of the risk of a disability and accuracy of the tests. I have no idea how these medical providers handled their part of this. It sounds like there may have been more they could have done. Certainly there exist more accurate tests than ultrasounds. However, people are going to have imperfect kids. If not DS, something else. Autism. ADHD. Traumatic brain injury. Cerebral palsy. Epilepsy. Stuff happens. As a prospective parent, you need to be aware that stuff could happen and you might have to deal with it. If stuff happens and you really feel like you cannot cope, there is support in various forms, or there are foster families and adoptive families who truly love special needs kids. Really. I know some of them. If you can't deal with the idea that stuff happens despite your best wishes and attempts to prevent it, may I suggest you reconsider the idea of becoming a parent? Kids do not come with guarantees. The doctor didn't manufacture your child, and you cannot take it back if you think it is "broken". No refunds, no exchanges. You just love the ones you get. Most of us don't choose to become parents of a child with disabilities, but most parents I know love the heck out of their kids and don't consider it "wrong" that they were born. Many of us move past the anger and find the positive in a situation that we didn't seek out, but a situation which turns out to be less horrible and more wonderful than anticipated.
If you have this "imperfect" child, and you decide keep this child in your family, and then you sue doctors over the very fact of this child's life, what kind of message does that send to your child (and your other children, and the rest of society) about the value of a person with disabilities? As a child, how awful must it be to know that your parents actively wish you had not been born? Ug.

1 comment:

  1. This is definitely too sad. Like the case in Florida where the "wrong" twin was terminated. Now what kind of life will these parents provide for their children? Will they keep them and ignore them, resenting them and wishing they had never been born? Will they put them up for adoption so another family can love them? Will they (hopefully) realize that they are their own flesh and blood, a whole beautiful life, and love them for who they are? I hope they get over the initial shock quickly and can move on with their lives, realizing that their lawsuits were embarrassing and silly, portraying them in a light that makes people around the world view them as unfit parents.

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