There have been a couple news stories circling around lately about parents suing for their child being born with cystic fibrosis.
1) A montana couple who didn’t plan to get pregnant is suing their health providers saying they would have aborted the fetus had they known their child was going to have CF. See the story here. Clearly, I think these parents are nuts and I feel so terribly for that poor baby. A baby is a blessing, and if you are suing because you would have killed it before it came to term, then I’m not sure what kind of parents this couple will be. Sure, CF is a scary and horrible diagnosis…. but it’s something you can learn to live with. And given the choice to DIE or have cf… I’d obviously choose cf.
And then, there was a second story that is a little more complex than this one….
2) A couple who underwent genetic testing of their embryo before implantation to ensure their child would not have CF is suing for malpractice because one of their twins was born with cystic fibrosis. The jury ruled in favor of the couple, awarding them $13 million for their expenses, life care for their daughter, and emotional distress. See the story here.
I felt compelled to write something because I’m not quite sure how I feel about this story. Sure, the couple spent money on a procedure that did not work correctly. For that, they should be compensated. But then comes the money for care for their daughter and emotional distress. This is the part that really confuses me. I’m trying to put myself in this couple’s shoes. If I had the opportunity to prevent cystic fibrosis in any child, I would like to think that I would take steps to do so. But on the other hand… no child is perfect and I have full faith that children born with cf in this day and age will have life a lot easier than I have. So I’m not sure I can put myself in those shoes until it happens to me.
But then, what would I do if my child was born with cystic fibrosis when I tried to prevent it? Again, it’s hard to put myself in these shoes because I have cf, so obviously I’m incredibly biased towards my own situation. Of course, I would be heartbroken, afraid, and nervous. But on the other hand, I would have an otherwise healthy child, and isn’t this the only thing that matters?
My parents didn’t know they were cf carriers. And for that, they went ahead and had a baby, knowing full well it may not come out perfect. And when that child had cystic fibrosis, there was nothing they could do to change that. There was no one to sue, no rewards to be had, nothing. Instead, they had to pull themselves up by their bootstraps and deal with it.
I think for many, many cf parents this story might be hard to read. The fact that this couple was awarded MONEY for the emotional distress that having a child with cystic fibrosis will cause them… sort of makes me squirm in my seat. No amount of money given to this family will make cystic fibrosis go away…. it would probably be better spent in funding for a cure than for so-called “emotional distress.” As humans, we are meant to feel tragedy in our lives. Yes, its difficult, but why must everyone go around suing everyone for their life tragedies? Sometimes, having a tragedy in your life is a blessing in disguise. Having cf has taught me so much about myself and has shaped me into a better person. There is no amount of money that could do that.
So I guess I’m not sure how I feel about the second story. Obviously, having cf myself makes me feel like screaming at these parents “YOUR KID IS GOING TO BE FINE! LOOK AT ME!” However, this couple is probably unaware of how much hope there is for their child, and that saddens me. I envy that child for being born in 2012, when cf research is at the brink of a life-changing treatment, when all of these drugs and technology that I didn’t have when I was diagnosed are in existence.
Whether or not you have cf, how do you feel about this story? It’s obviously a very sticky situation when you have cf yourself. Understandably, the parents were pretty upset that the genetic test didn’t work. However, do you think any amount of money can ease the difficulties of cf?
