what would you do?

A Portland couple recently received national – even international – attention over a landmark court case involving their young daughter. The 4-year-old girl, their third child, has Down syndrome, which was unknown to them during the pregnancy. After their daughter was born, they sued their health providers for allegedly assuring them that they would have a normal, healthy child following genetic test results (a CVS), despite the fact that two later ultrasounds apparently raised red flags for Down syndrome. Apparently they were also told that there was no need for them to get an amniocentesis for further testing.

A week and a half ago, a jury unanimously awarded the parents $2.9 million against the local health system to pay for the extra lifetime costs of caring for their daughter, admitting that had they known they would have a child with Down syndrome, they would have aborted the pregnancy.

Wow. I find this case fascinating not only as a parent, but it just so happens that one of the siblings of this little girl is in Ian’s class, and the older brother is a third grader. I have seen this little girl – most recently, just this morning as a matter of fact – with her brother, and her mother and father. I don’t know these people at all, yet it’s hard not to create opinions regarding such a highly personal matter in their lives. At the same time, I’ve never been in that position so how can one absolutely judge how they’d handle something they’ve never been through?

Central to the plaintiffs’ case was that apparently Legacy Health System botched the CVS by taking tissue from the mother vs. the fetus. If they had done the test correctly, it would have revealed that extra chromosome. And then there was the instance of being assured the pregnancy was normal despite two ultrasound results that were questionable. Other parents I have talked with about this case agree we are baffled if this is indeed the way things went down. My experience with both of my pregnancies is that health providers and genetic counselors go out of their way to assure you that no results of genetic testing are absolutely 100 percent conclusive and there is always risk with any pregnancy. Everyone I’ve ever spoken with has had this same experience. So, the report that this couple was assured that they would have a “normal” child is admittedly, somewhat hard to believe. And what reason would they have to continue to reassure the parents when two ultrasound results revealed potentially otherwise? Something doesn’t compute for me. But assuming that everything did happen as argued in court, on a logical level I can put myself in these parents’ shoes of feeling like they were denied the information they deserved to be able to make an informed choice about something that would affect the rest of their lives. And, yes, I might want the parties responsible to help pay, too.

What is harder for me to get past is the emotional side of this case. Even if I wanted to sue, I don’t think I could do it. Which gets to the heart of why there are so few of these cases filed – because doing so requires you, as a parent, to admit that your child is a burden to you and if you had known the burden they would be, you would have chosen not to have them. This little girl is very likely going to become aware of that someday. And her brothers are likely already aware that Mom and Dad have spent a lot of time and energy on this issue involving their sister, though it won’t be until later that they realize what it was all about. I saw a picture of the kids posted on a random blog (you know, kind of like this one) that this person appeared to have gotten from Facebook at some point. The faces were rightfully blurred out a bit, but you could still see that it was really cute: the two brothers with their sister in the middle, their arms around her and looking at her with smiles as she has this big smile on her face  – just three young siblings who love each other and see each other all equally. To them, it seemed she is just their little sister and there is nothing different about her. Just as it should be.

Then there are all the people out there who don’t know these people, but might immediately be making silent judgements when they realize who they are. From now on, every time they shake hands and say their name to someone new, will be they wondering if their name is recognized and if the person is thinking, “Oh, you’re the people who…” You only have to Google their names to see the venom that has been spewed around the world over this couple’s decision to put a monetary value on their little girl’s life and caring for her, the least of whom are other parents who also have a child with Down syndrome but receive no compensation for caring for them. Will they fear running into one of these angry people in the grocery store someday? If you’ve read the article links from above by now, you know that the judge didn’t allow their photos to be taken in court for safety reasons. As a coworker today said, this case touches on so many hot-button issues, it’s crazy.

Like I said earlier, especially as a parent, it’s nearly impossible to hear about this case and not have your own opinions – but ultimately these are people who were handed a child with a disability and I feel so grateful to say that I don’t know what that’s like, nor will I pretend to. Perhaps the most interesting, and potentially troublesome thing about this case will be to see what repercussions it might have for the way that health providers offer, or address genetic testing with their patients in the future.

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4 thoughts on “what would you do?

  1. It is heartbreaking all the way around. Melinda, in your post you have done a beautiful job of expressing the mix of emotions we must all feel about this case, these parents, this family — the whole situation. I don’t feel that I can judge the parents — but I do feel very sad for all involved.

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