Another part of being a mommy to a son who has Down syndrome is understanding the medical jargon and learning how to fill out the forms. Most doctor visits, whether to the cardiologist, the opthamologist or the endocrinologist involve filling out some form. A form that asks about Joey's health history. With our first son, Tommy, those forms were a breeze. Tommy was born via c-section (two weeks late!), has no known allergies, no hospitalizations, no surgeries...mostly nothing at all. For Joey's forms it is more complicated and what is just a "formality" often becomes more than that. Depending on the day, it can even get a little emotional. Oftentimes I just want to ask, "Do you really need to know everything?" Because let's be honest, Joey has got a medical record much thicker than any 17-month-old should have. I just start filling in the various blanks. Born at 37 weeks via C-section due to abdominal ascites. Under the bilirubin lights for five days for jaundice. Diagnosed with Nystagmus. Silent aspirator. On honey thickened feeds. Severe hypotonia. ASD repaired at 9 months old via open heart surgery. Leaky Mitral Valve still monitored. Hearing loss (extent unknown). Ear tubes placed at 15 months. Plagiocephaly corrected via cranial device (helmet). Torticollis corrected via therapy.
It's a lot when I look at it all, not as much or as bad as many other children experience and deal with daily, but a lot. And as much as it all is-- I would not change a single thing about any of it. To take anything away would mean changing Joey and he is who he is because of all he has been through and all he goes through to get there.
Once of all those blanks are filled out, you get to the part where you check yes or no to various ailments/medical issues. At this point there is usually a spot on the form where you are supposed to check yes or check no to: Mental Retardation.
That's a tough one for me. I'm usually the crazy/obnoxious mom who crosses the entire phrase out and fills in my own version. Usually it's "Developmentally delayed". I just can't ever bring myself to check Yes to the "Mental Retardation" box. I just can't. Think about it-- could you do it for your own child? I know--it's just a word. But words have connotations and meanings attached to them and that is one word I'm not willing to give on.
Which is what leads me to the entire purpose for this posting. There is a little girl, Amelia. Amelia needs a kidney transplant. Without one, she will probably die in the next 6-12 months.
Her parents plan on someone in their family donating to her. Children's Hospital of Philadelphia (CHOP) have denied her a spot on their transplant waiting list because. . . she is "mentally retarded". Can you even imagine? This is her story here.
It's only mid-January and we have almost hit's Joey's yearly deductible for health insurance. I just got a letter yesterday asking if his medical costs were due to an injury at work. I had to smile. The letter said that they are concerned with decreasing costs and cost containment. Then I read about Amelia. And that's when I became really worried. Then I was scared. Where is our health care going? This is the United States. What if Joey needs a transplant at some point. Will he be denied because a box on a medical form declares that he is "Mentally Retarded?"
Are you angry about Amelia's journey? Are you outraged that CHOP is denying her the right to try and live? If you are-- re-post her story.
You can also go to Change.org and sign the petition.
Here is what Tim Shriver (LOVE TIM SHRIVER!!! Also LOVE Eunice Kennedy Shriver who started Special Olympics) says about this travesty:
Raise Your Voice for Dignity!
Many people have shared with me in recent days the tragic news about a girl named Amelia who was refused a spot on a waiting list at the Children’s Hospital of Philadelphia for a liver transplant because she is “mentally retarded.” When I heard about this, it made my blood boil.
Some have questioned why we in Special Olympics have mounted a campaign to challenge the humiliating use of the word, “retard.” Others have sometimes suggested that Special Olympics has gone beyond its mission in mounting the world’s largest public health campaign to close the disparities and outright bigotry that still infect systems of care delivery for people with intellectual differences. Still others wonder why so many of us speak with such passion about how sport is needed to unleash the power of the human spirit and to attack the vicious discrimination that so often crushes innocent people unjustly.
I say to all of them, open your eyes to the discrimination that goes unchecked all around us and help us stop it now!
If you are a medical professional, raise your voice for dignity now!
If you are a conservative political leader, fight for the dignity of all citizens now!
If you are a liberal political leader, fight for the dignity of all citizens now!
If you are a parent, raise your voice for the dignity of Amelia just as if she were your own now!
If you are a young person, blast the social networks with your commitment to Amelia’s dignity and justice now!
If you are a Special Olympics athlete or family member or coach or volunteer, challenge the status quo and fight for Amelia’s right to play and win the game of life now!
There can be no bystanders at moments like this. Amelia is everyone’s child. If she is denied care, we are all denied our humanity.
This is life and death and that’s not just rhetoric. Please join us in stopping this tragic injustice.
Please join in the fight to preserve dignity. Please fight for Amelia. Please fight for Joey and all the other millions of people who have an intellectual disability.
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Unbelievable.
ReplyDeleteWe too have been told that when Sam's cardiomyopathy reaches the stage that meds can no longer keep him stable, his genetic condition will make him 'ineligible for a heart transplant'. My skin crawls each time I think about the day I heard those words. What makes him a lesser human being? Why is his life not of value?
ReplyDeleteAmelia's case is not the first of it's kind, and sadly it will not be the last. Thankfully her parents and Mr. Shriver are bringing it to the forefront, and perhaps change will come.
On another note Jen, I have found it useful to create a document listing Sam's genetic condition, meds, surgeries, etc.....which I take with me to each appointment and hand over instead of filling out those endless forms. In addition, I keep one in his backpack and all vehicles in the event of an emergency. Hang in there!
Charmed-- what a wonderful idea to create a document. That is on my "goal" list this weeek! I will put it in all of our places- backpacks, cars- Thank you for the great idea. That also makes my skin crawl that Sam would be ineligible for a transplant. Thank you always for your comments!
DeleteI can't help but wonder if there's more to the story than what has been shared. It's terrible that she's being denied a transplant, but what are all the reasons? Is it just because of her disabilities, or does her genetic condition make her more susceptible to complications from the surgery? Without knowing the whole story, we can't vilify the hospital for the decision that was made. All we can do is pray that Amelia receives the best care possible and that if an injustice has been done that it is corrected.
ReplyDeleteLynette- you are probably correct-- there is usually always more to every story, but I have been reading about this and it seems that people who have developmental disabilities are sometimes disqualified for transplants for that reason alone. We can pray for Amelia and we can also spread the word to become and organ donor. Thanks for your comment!
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