I hadn’t planned on posting anything today, but all that changed when I started my computer and read a news article from my internet home page. It was about a 3-year-old little girl in New Jersey who’s need for a kidney transplant has sparked a highly controversial national debate. According to the article, the issue began last week when the parents of 3-year-old Amelia, were told by a doctor on the transplant committee at The Children’s Hospital of Philadelphia that their daughter does not meet the eligibility criteria for the transplant because…GET THIS…because she is “mentally retarded”. The little girl was born with a rare genetic defect called Wolf-Hirschhorn syndrome, which can cause mental and physical disabilities. After the encounter, the little girl’s outraged (and rightly so) mother posted the details of that meeting on her personal blog, which in turn was shared nationally by thousands of complete strangers–eliciting an online petition against the hospital and the transplant committee’s rules and regulations and sparking a great deal of controversy/media coverage. You can read the mother’s blog post for yourself here:
http://www.wolfhirschhorn.org/2012/01/amelia/brick-walls/ and the news article here: http://start.toshiba.com/news/read.php?rip_id=%3CD9SBIE3G1%40news.ap.org%3E&ps=1011&page=1.
It’s unbelievable. I’ve re-read both at least half a dozen times already and each time, I just get more and more angry. And disgusted at the narrow-minded-ness of not just the medical world, but of humanity itself. The mother was completely justified in every thing she said in her blog post and to be honest, I don’t know how she managed to get through that conversation and that meeting at all. If that had been me, I probably would have crossed that conference table and punched that doctor and that social worker both right in the face. I really would have. Especially the social worker for saying what she did. To hell with them just doing their jobs or that they have rules they have to follow–to hell with all of it. As a doctor–as someone who takes an oath to “do no harm” and to preserve life–how do you sit there and tell someone that their child is “ineligible” to have a life-saving transplant simply because she is, through no fault of her own for that matter, developmentally delayed? HOW DO YOU DO THAT??!!! It’s absolutely unfathomable to me how anyone–doctor or not–could say that. Or that how regulations and rules like that can even be decided or made in the first place. It’s unreal. It’s cruel. And its just plain wrong.
I don’t know that little girl. Or her parents. And aside from a few words in an article and a blog post that I’ve read–I don’t know her story. So why, then, am I so emotional over this? After all, it’s not personal, right? Except that it is. IT IS PERSONAL. It’s personal because, in a lot of ways, that little girl is my niece. My beautiful, amazing little 6-year-old niece Emma. She’s the face I pictured as I read that mother’s blog post. The reason I can relate so easily to that mother’s outrage and absolute contempt–is because I’ve seen and felt the same injustice, on more occasions that I can count, happen to my niece.
My niece was born premature, weighing only 3 lbs. 14 oz. She almost didn’t make it. As small and as underdeveloped as she was, there was a great deal of doubt as to whether she would or not. Initially, I don’t think the doctors expected her to make it through the first 48 hours, let alone longer. But as she so often does, she surprised us all by pulling through. It was touch and go for a while there. Her condition would start improving and then– just like that– she’d stop gaining weight and breathing on her own and it was machines and tubes everywhere again. It was utter hell. The kind of hell that you would think unimaginable–but it was. It was real. And it was absolutely terrifying. To watch a baby that small–niece or not– have to suffer that way and have to stand there completely helpless–it’s devastating. But when it’s someone you love–it literally just tears you apart. It truly does. Going through that–it changes you. It changes your whole perception of the world, you know. Makes you rethink what you thought you knew, and question your beliefs. Religiously speaking–it really made me think. Standing there in that NICU–I couldn’t help but wonder whether there really is a God or not. Part of me thought that there must be, seeing that she was a miracle in that she existed at all. At the same time, I just couldn’t understand how anyone or anything–how God–could be that cruel…to let an innocent little baby suffer like that. I couldn’t find the answers then. And I still don’t have them. It’s difficult to believe–especially when I see nearly every day–evidence to the contrary. Whether it’s something to do with my niece or like today, with the blog post and news article–there’s always something.
We were thrilled beyond belief and of course, relieved when the hospital finally let her come home–a little more than a month after she was born. I don’t think any of us expected or could have imagined at the time that the hard part was in fact, yet to come. No one could have predicted what all that we have been faced with since. That she has been faced with. I think that because she was so little and the fact that she almost didn’t make it–it made us all over-protective of her. Since all that really mattered was that she was okay–we didn’t really notice the small things that–had we paid closer attention, we would have noticed–that just weren’t quite right. She didn’t crawl, walk, or talk at the time that babies her age should have. The doctors didn’t seem to think it was an issue, therefore we didn’t either. They just kept telling us to be patient and that she was a little behind because she was a preemie–that she’d catch up in time.
But the doctors were wrong. They screwed up and wasted a lot of time by playing the concerns down to nothing. My niece was barely a year old when she had her first seizure. Still, just a baby. It scared the hell out of everyone, it really did. The doctors down-played it, of course–using the excuse that she’d had the seizure because she’d been running a high fever at the time. “It happens” was what we were told. Then it happened again. And again. It was scary because she’d be completely fine and then out of nowhere, she’d spike a fever of 104 or higher and have a seizure. After she’d had about 3 or 4 of them, her pediatrician started calling them “febrile seizures” or fever seizures. He basically told us that there was nothing we could do about them, except to be prepared for if and when the time came. So that’s what we did. We did nothing and we waited. Every time she’d spike a fever, we’d have this little routine of ours that we’d do. We’d piggy-back the Tylenol and Motrin, give her a tepid bath, and wrap her in wet, cool towels. After that, all we could do was sit there and hold her and wait for her temp to come down–and just hope that she didn’t have a seizure while we waited for that to happen. It was horrible and scary and more than anything–frustrating. It was maddening as hell to have the doctor shrug and say it was no big deal every time. “She’ll grow out of them by the time she’s 5” he told us. Again, he was wrong.
It took a lot of insisting on our part to finally convince her doctor that something was wrong and to persuade him to at least run some tests–which was total bs if you ask me. We shouldn’t have had to insist on anything–he’s the doctor–he should’ve known that something just wasn’t right. But of course he had a medical degree, so there as no way he could have been wrong. Uh huh. Anyhow, after a boatload of tests, our concerns were validated. As it turned out, she has a rare genetic defect that has to do with one of her chromosomes. There’s not a lot that is known about it because it’s so rare, so the doctors could only tell us what may or might become an issue–based on the cases that have presented so far. Basically, we were given a list of possible medical issues that my niece might end up having. The list included developmental disabilities–which accounted for why she was a little behind for her age. Epilepsy was also on that list–which explained the seizures. As upsetting as it was to hear the final diagnosis, we were relieved to finally have some answers.
Since then, it hasn’t exactly been an easy journey. Not for anyone-but Emma especially. It’s been hard on her. It still is. She’s got a whole string of different specialists that she has to see. She’s got a neurologist, cardiologist, urologist–and half a dozen other -ists. She has frequent check-ups and doctor visits and tests. It’s unreal. It’s heartbreaking each and every day, knowing there’s nothing anyone can do. Because of the developmental delays associated with the genetic issue, she has learning disabilities. She goes to school, but she’s in a special needs class and has to have one-on-one teaching and care. She doesn’t really understand what is happening or why things are the way that they are. She’s on anticonvulsants meds for her epilepsy that she has to take everyday–the side effects of which make her very aggressive. She’s constantly hitting and throwing tantrums and yelling–all of which has taken a toll on everyone around her. It’s hard because you can try to tell her to not hit or be mean or to not do something until you’re blue in the face—but she will. And even though we know that it’s the meds and that she can’t help it–that she doesn’t understand that what she’s doing is wrong–we still crack under the pressure sometimes. She’s a handful, that’s for sure.
Despite it all—I still think she is perfect in her own unique little way. She’s amazing. She’s smart and willful and determined and strong. She’s gone through so much, but it hasn’t dampened her spirits one bit. Not one bit. She’s one of the happiest little girls I know. She’s always smiling–even when she’s smacking you in the face. She’s sweet and loving and has a huge heart.
It’s for that reason that I’m so angry about this 3-year-old little girl in New Jersey. What’s happening isn’t fair and it sure as hell isn’t right. She has just as much of a right to be treated and have the transplant she needs as anyone else does. For some doctor or committee somewhere to say that she doesn’t simply because she has disabilities– is totally screwed up. For them to assume or even comment on the girl’s “quality of life”– it isn’t right. It’s like what the mother said–they don’t know her. They don’t know what she’s been through, or how it’s affected the lives of those around her. Just like the doctors and teachers associated with my niece don’t know. They don’t know my niece and the amazing little girl that she is. They don’t know how hard it is on her to have to go through all that she has gone through–and all that she will continue to go through. They don’t know how difficult it is for those taking care of her–how stressful and frustrating it can be or how hopeless it may seem sometimes. They don’t know anything. That said, they have no right to say what kind of life she or that little girl in NJ or any other child with disabilities for that matter, should or will have. No right whatsoever.
So, those are my thoughts on the matter. Hopefully it will all work out for that little girl and her family. And hopefully, humanity will get better. I hope.