First, let me give you a little bit of a background to go with this…
Every night, I have a certain nightly routine. I read the news on my phone, check my facebook on my phone, and then check my emails from my phone- all while lying in bed, right before I fall asleep (bad, I know, but I feel like that gives me a clean slate until the morning).
Friday night, I did my usual routine. Checking my email also consists of the emailed posts of bloggers.
I ran across my post update email from Not a Perfect Mom’s Blog (one of my absolute favorites) and was livid. I have tried sitting on this for a few days, but there still are no words to express my anger, disgust, sadness, for this situation. I cannot fathom… Livid cannot even come close to the emotions I am feeling.
You can read the entire post here. To sum it up, there is a precious 3 year old girl who is developmentally disabled/mentally handicapped and has brain damage. The doctors (in the post) like to call her “mentally r-word” (no, they didn’t use the literal words r-word, but the actual, real r-word that I despise). Sweet Amelia is in need of a kidney transplant that her family would donate. Please note: the family will donate. She will not be on a wait list. She will not be taking a healthy kidney from another recipient. The family will donate. Unfortunately for Amelia, someone apparently died and made her doctors at Children’s Hospital of Philadelphia (you can find their facebook page here) God.
Her doctors are not going to give her the kidney transplant because she is “mentally r-word”. Her quality of life is not good enough to receive a kidney transplant because she is “mentally r-word”. The doctor provided a ton of excuses which you can see in the post mentioned above and let me tell you, as a mother and as an advocate who adores the developmentally disabled population; I have a rebuttle for each and every one of his lame, pathetic excuses!
In response to their saying the family will donate the kidney, the doctor tells them: “Noooo. She—is—not—eligible –because—of—her—quality– of –life—Because—of—her—mental—delays”. Again, who the hell died and made him God. He is a man. A mere man with education under his belt. Any one of us can become doctors by getting the proper education. So no, really, he is no better than me. I have a degree too. It happens to be in psychology- you know, the mentally handicapped, the “mentally r-word”. He has no right to say that because of her mental delays, she has less quality of life.
Via the social worker: “Well, you know a transplant is not forever. She will need another one in twelve years. And then what? And do you have any idea of the medications she will need to take to keep her healthy? Well, what happens when she is thirty and neither of you are around to take care of her.” “What happens to her then? Who will make sure she takes her medications then?”” Amelia’s mother made a great comeback of: “Well, what happens if you die tomorrow? Who will take care of your children? Your responsibilities at work?” She breathes in and her eyes widens. “Right!” I throw at her. “Neither of us can predict the future and we shouldn’t try. But if Amelia does not have this transplant she has no future!” I completely agree! With this transplant, she will be given another 12 years. Without this transplant, she dies in 6 months to a year. How can one be so cold as to deny a child life!? This day in age, there are plenty of people to help care for a child- developmentally disabled or not. What is that saying- it takes a village to raise a child.
“These medications she has to take after the transplant, they are very dangerous. They can cause seizures. We have to get the dose exact. They may cause brain damage.” “Yes, but it is different for her. She is already brain damaged and mentally retarded.” I am sorry, but each and every person is DIFFERENT. News flash to that doctor. What one medication does for one person can do a totally different thing to another person. Who is to say she won’t react well to the medication? And even if she does not fair well, you are still giving a child more time on Earth with her family.
I am sorry, but I am just baffled that someone would deny a child at a chance of life. It does not matter that she has mental handicaps. She is a little girl with life! I have worked 9 years in the field of the developmentally disabled and can tell you some stories. No one, and I mean no one, has the right to determine life or death- especially when it comes to a child. Especially when there is a chance to provide her a better life and have her life last a little bit longer than her current prognosis.
I am sickened by the doctor and social worker that are on this case. I have signed the petition and ask that you please take a moment of your time to go sign that petition as well. What would you do if that was your child!?