"Wrongful Birth" Lawsuit

Yesterday, a jury awarded a couple $3 million for a wrongful birth suit, because their prenatal genetic tests came back negative, yet their child was born with Down syndrome. 

The parents testified that while they love their now 4-year old daughter, they would have terminated the pregnancy had the test been accurate, and they are now trying to secure money to take care of her now and in the future.  Do they think their daughter and 2 older children won’t understand this?!  The kicker – the jury took only 6 hours to award the money. 

This story has brought up a ton of emotions in me, some I’m not proud of.  I am trying (unsuccessfully) not to judge.  I am trying to imagine how much harder it might be to raise Grace if we didn’t have the strong family support we have.   If we didn’t have the flexibility in our work to allow us time to be present at the many doctor and therapy appointments.  If we didn’t have good health insurance.  If we had significant debt.  

The topics that culminate in this lawsuit are loaded.  But one that has come up a lot recently in the news and on blogs is that of prenatal testing.  And there are strong opinions out there. 

I personally am not against prenatal testing.  I think it can have value in allowing you to plan.  While we didn’t have a definitive prenatal test, we did have many tests that pointed to Down syndrome, and many others that defined Grace’s heart defect.  These tests made for a stressful pregnancy sometimes, but they also allowed us time to find the right surgeon to do Grace’s heart surgery.  And after learning of the intricacies involved in her repair, that planning time was possibly life changing for all of us. 

I’m not convinced the answer is to try to get rid of the testing, if that were even possible.  I’m not convinced shouting my opinion on the internet is the answer either. 

I do think the answer is, at least in part, education.  Education not only of couples who don’t know all their options and possibilities, but even more so of the medical team advising them.  Those couples that have strong opinions as to keeping or terminating the pregnancy based on a prenatal test will likely go unchanged.  But there are a number in the middle, who are relying on what their doctors tell them in order to help make a decision.  And when you’re pregnant and hormonal, and a doctor is advising you to quickly make a decision , it can be confusing and you can get caught up in the stress and timeliness of it all. 

When our nuchal translucency test came back positive for a 1 in 5 chance that Grace had DS, we were advised “to do a CVS that night so that we could have an answer the next day so we can quickly make a decision/arrangements”.  This was said by a doctor casually eating chocolate while talking to us.  We were not given any literature or resources on what it might mean to have a child with Down syndrome, we were just told that we needed to move quickly.  

While I had not planned or wanted to use this blog as a platform, I’m having a hard time not to in this circumstance.  I think we as a community have an opportunity to make a change, but not through anger and forced opinions.  Not through just preaching to the choir and patting each other on the back.  But through example, and education. 

I’m not sure how much training in the reality of life with Down syndrome that doctors and genetic counselors get.  But maybe, if we volunteered to speak to a class, or to be a resource for or share our blogs with maternal/fetal clinics whose patients may be facing the possibility of a child with Ds, or to host a medical student or genetic counseling student for a day, so they could see a day in the life... just maybe we could start to help doctors and counselors know better how to show these scared couples all of their options objectively and with equal weight.   Are you up to the challenge? 

The truth is, having a child with Down syndrome is challenging, and can be at times heartbreaking and scary, and can be financially challenging and time consuming.  It can also be rewarding, and joyful, and normal. You could easily take the words “with Down syndrome” out of that sentence though, because no child’s path is guaranteed to be perfect at all times.  And sometimes, most times,  it's the imperfections that make it all the more perfect.