Great Falls Tribune: Parents of child born with cystic fibrosis file lawsuit

I’m just going to quote the whole article.

The parents of a child born with cystic fibrosis have filed a lawsuit against health care providers contending they would have terminated the pregnancy had they known of the genetic disorder.

The Bozeman Daily Chronicle in a story published Sunday reports that Kerrie and Joe Evans of Gardiner filed the lawsuit in October in Gallatin County District Court, citing emotional distress and increased health care costs.

Named in the lawsuit are Livingston HealthCare, Bozeman OB/GYN and Shodair Children??s Hospital Department of Medical Genetics. Their attorney has asked that the case be dismissed.

Cystic fibrosis causes sticky mucus buildup in the lungs and other organs, leading to infections, digestive problems and death in young adulthood.

The typical life expectancy is about 37 years, according to the Cystic Fibrosis Foundation.

I decided to look up whether or not the test could be done in utero and according to March of Dimes, it can if medical tests show both parents to be carriers. If both parents are carriers, it’s a 25% chance that the baby will have CF.

Apparently, both parents did not know that they were carriers. According to the March of Dimes page, the risk is 1 in 29 for Caucasian parents. Doing the math, their risk of having a kid with CF is (1/29)x(1/29)x(1/4) which equals 1/3364 which is 0.0292%. In other words, it’s a very low risk but both parents have to know that they were carriers to have this result.

(By the way, my risk of HEELP Syndrome to the extent that I did was between 0.02-0.06% for comparison.)

As a mom of a special needs child, this is rendering me so angry that I’m almost speechless. Yes, it’s hard. Yes, the medical expenses are insane but apparently nobody decided to tell them to apply for Medicaid or SSI because their child could likely qualify. I’ve been in the NICU with Daniel as well as the PICU and the PICU stay was definitely worse because I saw kids *die* in there whose families I had come to know. Heck, my kid almost died one evening. It was the worst evening of my life and I never want to experience it again. Guess what? I’m not getting any emotional distress compensation for that nor will I ever. I’ve had to fight with Medi-Cal and California Childrens’ Services to pay for the part of his hospital stay and subsequent medical treatment that insurance didn’t cover. Apparently, I’m not getting a medal for that either.

However, if Daniel had died that night, all the angst/trauma/fighting for him would have been so incredibly worth it and I would have praised God for giving me the time I had with him because my life is immeasurably better because of him. Having Daniel taught me how to stand up for myself and not to take any crap from anybody. Getting to hold him for the first time in the NICU was amazing and one of my favorite pictures is of him and I asleep in the NICU on Mother’s Day. He is such a fighter that he inspires me daily and even though I have put God on notice several times since his birth, he has taught me so much about God’s power to heal.

I think the person in my life that most deserves to be angry at this story is Paula Ruter, a mom online who I have gotten to know. Her teenage daughter Anna has MSUD (Maple Syrup Urine Disease) and has suffered brain damage as a result of her protein levels getting so high and edema setting in. Paula isn’t getting any emotional distress compensation nor would she think of asking for any. By the way, MSUD is rare — the odds are 0.00056% so if anyone deserves compensation, it’s her.

I have said that I will never judge anyone on having an abortion because I am not in their shoes and I would not be able to make a decision like that for them. I think I may be proved wrong in this case.