We take a lot of tests during pregnancy to ensure that our babies are healthy. Sometimes, a positive outcome on certain tests, like the one for Down Syndrome, might cause some couples to abort the baby rather than face a life of disability. An Oregon couple said they would have done just that had they’d known that their daughter would be born with Down Syndrome. But after being assured by their doctor that the baby was free of the genetic disease, they went on with the pregnancy, and their daughter was born with Down Syndrome 4 years ago. After suing Legacy Health System, Ariel and Deborah Levy were recently awarded $2.9 million in a “wrongful birth” suit.
The couple says they clearly would never have had this child if they knew, and now they will use the money to help care for their daughter’s special needs. This type of case going to trial is rare, partly because of the repercussions of parents testifying that they would have aborted their child if they had known (and you can just imagine the long-term mental damage that testimony might do to a child as he/she grows up). Here is how The Oregonian sums it up:
Experts say so few parents choose to file wrongful birth suits because it forces them to take an awkward position: They must be willing to say on the record that they would have aborted the pregnancy, and that they feel a burden – albeit financial – of raising the child.
But where does that leave the countless other parents who are (many happily) raising their special needs child? Should every parent who has a child with Down Syndrome be entitled to a few million because doctors should have caught the disease during pregnancy?
There is still speculation on both sides as to why this error occurred. The couple says that maternal tissue was sampled instead of fetal tissue producing a false negative result in the chorionic villus sampling (CVS). Legacy’s attorney, Robert Keating, maintains that the CVS was properly done, and that “the results showed the girl has a normal genetic profile because she has mosiac Down syndrome, meaning a significant number of her cells don’t contain an extra 21st chromosome.”
I’m a big believer in giving people the benefit of the doubt because you can’t know for sure what anyone is thinking or know exactly what you’d do if you were in their circumstance. I also know how quickly stories get spun to generate media ratings, so I don’t think any of us can say for sure what actually happened. And we shouldn’t judge.
However, I honestly do feel that by instantly equating a diagnosis of Down Syndrome with a need to abort a pregnancy is a terrible thing. There are countless babies, children and adults living full and productive lives with Down Syndrome. Of course, we wouldn’t wish a disease on anyone, especially our own children. I can’t say that it’s right to abort a baby just because he/she has a birth defect with a clear conscience. Statistics show that it has become common practice to abort Downs babies based on prenatal testing.
The decision to keep a pregnancy in the case of Down syndrome is a personal one. When it was offered to me, I declined it because I knew that no matter what, my baby was with me for the long haul. I told my midwife that the results wouldn’t matter because I was having my baby anyway. Had he been born with Down syndrome, I wouldn’t have regretted having him. I know kids and adults, beautiful human beings, who are living with Down syndrome and have very full, engaged lives. Strollerderby’s Julie Miner summed up what I was thinking when she wrote: “If Stephen Hawking’s mother lived in Fairfax County, Virginia, in 2012 and had a bunch of prenatal testing – perhaps there would have been no Stephen Hawking. People’s abilities are so subjective but the contributions they make to humanity, their community, their family? Limitless. As if ANY prenatal test could possibly measure that.” Well said.
While Hawking’s health issues were not a result of a birth defect, who is really to say what someone can accomplish despite differing health circumstances? Actor Chris Burke, who played Corky on the series Life Goes On is perhaps the most well known face of Down Syndrome; yet for every Chris Burke, there are countless others with Downs who also lead very engaging lives, hold a job and get married.
There are many myths regarding the disease that perpetuate the dilemma, like people with downs have a short life expectancy, are unemployable, will never marry, etc… These myths, and more are all disputed by the National Down Syndrome Society.
I don’t begrudge the couple receiving the money to help care for their daughter; I just wish every family that had a special needs child could receive the same. Or better yet design a healthcare system in which every child (including special needs children) is entitled to every therapy and service he/she needs. Of course, that won’t happen any time soon, and there are countless families struggling just to hold on to their jobs needed to support their families and care for their special child at the same time.
What do you think? Should this couple have received the money? Should babies with Down Syndrome be aborted as a common practice? Are we playing judge, jury and executioner by deciding who has the right to live or not?
Image: National Down Syndrome Society
Read what our bloggers had to say in our latest Strollerderby Salon: Is Abortion the New Normal For Down Syndrome Babies?
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