Monday, June 10, 2013

My opinion on Sarah Murnaghan.

I don't know if you've seen or are following the story of Sarah Murnaghan, 10 year old cystic fibrosis sufferer who is dying from CF. She has been on the pediatric list (12-) for lung transplantation for 18 months and recently her parents waged a media war and petitioned to get her also listed on the adult list (12+). They achieved what they wanted and she was placed by court order on the adult list. You can read media reports on it here, here, and here for full details. For weeks now I have seen her story shared all over my friends facebook pages, I read all the articles that I seen posted and followed her story the best I could. Now let me say a couple things before I state my opinion on this topic. I do not pretend to be an expert on the subject, I know what I have read through the media about her story and about lung transplants through UNOS, Gift of Life, and other peoples experiences with it. Opinions are always going to vary and especially on hot topic issues like organ donations. In fact my Mom and I disagree on this case. Putting this into words has been a challenge for me over the last couple days, so bare with me if my thoughts seem jumbled or not put together.

I completely disagree with Sarah being placed on the 12+ list based only on a court order by a judge who has no expertise in the field, instead of a panel of doctors and experts on organ/lung transplantation. There are a few reasons I believe this and let me just start with the one that to me seems so obvious, her life is no more valuable than the person that might not get lungs now because she was put above them. No one persons life is more valuable than another. Now I know people are moved above others all the time on transplant lists, but that's based on medical necessity, not because they got court orders to be there. I can understand how that might sound harsh. Are children more precious? Absolutely! I am a mother so I can speak from a parents heart. If it was me I would want everything done to save my child also, but I could not do so knowing that it could come at another child's life. Which in her case it very well might. Could you look another mother in the eye and say my child is more worthy than yours? I could not. She was on the top of the pediatric list where she rightly belonged, and although they speak of it as the adult list it is 12 and older. So there are deserving children that are just 2 years older than her on that list as well, not just adults. The rules for the difference in pediatric and adult were set in place for clinical reasons by many doctors and experts in the field to be as fair as possible for everyone. There could be more complicated issues with a child being transplanted to young, than with an adult and that's why the rules stand as they do. Another issue I have with this is they will most likely have to modify adult lungs to fit her, which this is practiced in adult to adult transplants too, but I can't imagine to the extent it would have to be to fit a 10 year old. Why shouldn't a person who is just as sick but is a better fit get those lungs? If there was no one to fit them by all means try to make them fit for her or a smaller person. I believe the person that has the best predicted outcome based on need should get them first. Adults generally have better predicted outcomes, so should we start saying children get precedents simply because their children and it's to sad to watch them die? Another perspective is that even though adults are grown they are someone's child too, for a parent I don't think it hurts any less to watch you 20-30 year old child die any more than it would if they were 10. Some of those adults listed may also be parents to children themselves, do their children deserve to be parentless at the expense of another child's life. I just really don't like the way they went about getting what they wanted, it seemed very temper-tantrum-ish to me, Had this decision been made by experienced people from the UNOS/OPTN than I might have a different opinion. After review today they have decided that the rules will stand the way there are, but will start to review some children under 12 on a case by case basis, you can read about that decision here. There is a couple articles that also explain things from a different perspective that I thought stated pretty much my thoughts on it as well you can read those here and here.

It's not fair, CF never seems to be, nor is it fair to need to be on a transplant list. I truly wish nothing but the best for Sarah and her family, have and will continue to Pray for them. If you want to do something to help 1. Become an organ donor 2. Donate to CF research so we can find a cure so there's not a need for us to have lung transplants!