03.16.12 How one family is shining a light on genetic testing.
A couple in Portland, OR just won a wrongful birth lawsuit because their genetic testing was flawed and they delivered a daughter (now 4-years-old) with Down’s syndrome. Mom was just shy of 35-years-old when she got pregnant so they opted for genetic testing. When test results determined their fetus was normal they continued with their pregnancy and delivered a healthy newborn baby girl. Healthy, that is, except that she had Down’s syndrome.
The parents were shocked, but learned to love and accept their daughter for the bundle of joy that she is. So why the lawsuit? Because they know they face a lifetime of unaffordable medical care, occupational and physical therapy and additional support services to raise this daughter. They say they would have terminated the pregnancy rather than face the financial and emotional burden of raising a child with a disability. They love their daughter and want to help her develop to her full potential, but they know that’s going to be all kinds of crazy-expensive. Since there’s no way for an average American family to pay for extraordinary medical bills, they felt they had no choice but to take this to court. They’ll be awarded $2.9 million dollars - the estimated costs for supporting their daughter with Down’s syndrome.
This is a multi-faceted situation that should be discussed from so many angles:
- The case for and against genetic testing – Are we doing the right thing by denying children with health differences the right to live? Isn’t there value in all kinds of lives? Isn’t’ that what we mean when we say, “honor diversity?” On the other hand, not every parent is cut out for the heroic job of raising a very different child. Don’t parents have a right to choose what type of life they’ll lead? Good questions – I don’t have the answers.
- The reality that mistakes get made – It happens. Despite all our scientific advances, medical procedures are still performed primarily by humans. We’re just people going to work, doing our jobs as best we can and going home to our own families. Humans make mistakes. Someone has to pay for them, but does it have to be the people who provide the care? What if there was a “mistakes happen” fund that covered this type of thing instead of penalizing the same folks who spend their careers dedicated to providing advanced, but very personal, health care.
- The horrible choice - Why should parents have to choose between having a normal child they can afford and having a special-needs child they might not be able to? What if our society provided all the support a special-needs child and her family required at no cost to the parents – would there be fewer terminations? Would we be better able to recognize the value that people who are different provide society and the value of caring for them?
What if we lived in a world where all children were valued and all parents were enabled to raise them to their full potential? What if we realized that the beauty of life is in the variations and unfathomable array of possibilities? This family who sued isn’t arguing that their child isn’t valuable or beautiful. They’re arguing that they can’t afford her special needs. That’s what our health care system does to people.
I’m not saying that there isn’t a place for pregnancy termination. I’ve worked in women’s health for over 30 years and I know it’s necessary in some circumstances. It’s heartbreaking and no woman (or family) takes it lightly. But, I have to wonder, would fewer parents make that painful decision if they didn’t have to worry about how to get health care, pay for medical bills and all the financial and emotional challenges that special needs families deal with? Some would, knowing they didn’t have the personal resources to raise a disabled child, but some wouldn’t. Some would say, “Bring it on. I’ll take the beautiful little person I’m carrying no matter who it happens to be.” That is, if they could afford it.
There are thousands of comments online judging this family for bringing a lawsuit that seemingly devalues their daughter’s life. I don’t see their situation that way at all. I see it as another opportunity to recognize we have a terribly flawed healthcare system that could do a whole lot better supporting its patients, healthcare providers and society. I see it as an opportunity to really talk about what genetic testing and termination mean – the good, the bad and the ugly.
When all is said and done though, let’s talk about the odds, risks and gambles of pregnancy. Certain types of genetic testing are 99.7% accurate. Even with odds like that, there’s room for inaccuracy. It happens. Every pregnancy requires risk. The stakes are very high, but it’s a gamble that usually pays out incredible rewards, no matter which child you get.
Jeanne Faulkner, R.N., lives in Portland, Oregon with her husband and five children. Got a question for Jeanne? E-mail it to firstname.lastname@example.org and it may be answered in a future blog post.
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