Is He Not Worth Saving, Doc?

It came to my attention earlier this week that discrimination against people with disabilities is still more alive than I thought. I know there will always be some kid on a playground or some adult at the grocery store who will discriminate, but I thought the medical community had at least caught up with the times. Before medical personnel stop reading this post in irritation, I know that it HAS come quite far and that those characteristics I speak of are not true of ALL medical professionals. But has the medical field completely rid itself of discrimination in life and death matters regarding people with disabilities? I don’t think so, and it seems my husband I have this concern in common with A large portion ,if not all , of the Down Syndrome community and then some.

What made us realize this discrimination was a friend from our Down Syndrome support group mentioning a little girl around Ethan’s age who was dying because she was denied a heart and said that the reason for it was that she has Down Syndrome. When I asked if this happened often, the friend said that it is not necessarily exclusive, but the Down Syndrome if often taken into consideration in deciding who will get the organ. I was so shocked and hurt when I read her response and went to look at pictures of this sweet little baby in her last few days. It was so heart-breaking. She was frowning, purple-tinged eyes closed and her parents and sister lying next to her trying to comfort her on her way to Heaven. I couldn’t believe my eyes and was so enraged and hurt that this could still be a problem, that our babies could be discriminated against in this day and age of supposed enlightenment and diversity. I know the world isn’t perfect and there is still discrimination of all kinds, but surely it could be better than this..? In the United States? I next searched to find answers as to whether someone wasn’t mistaken and it was actually not a complication that was causing all these children with Down Syndrome to be turned away. I found that, sadly, doctors make it SOUND as though there are complications that will make the child with Down Syndrome “incompatible with transplants”, but when parents investigated, they found that to be a well-cloaked LIE! What was really going on in many cases was that the children with disabilities are not valued as highly as the typical children or children with average and above IQs! I just cried tears of rage about this injustice that could well haunt us in years to come…After all, don’t half the kids with Down Syndrome have heart defects they are born with? My son has a repaired heart defect, but he still has some mild mitral valve leakage. It probably won’t be an issue, but we don’t know for sure. And we cannot have peace of mind that our child will just simply be treated as much as worthy as the next to receive a heart?? Or any other organ? Reading these facts was the single-handed biggest SLAP in the FACE I have had in the two years I have been a parent, and a parent of a child with special needs.

Now that you know what I’m so upset about, here are a few things I’ll discuss:

1) Why is this so upsetting and wrong?
2)Has the issue improved over time and how can it improve?
3) What can we do as friends, and
4) What can we as parents of kids with disabilities do to make sure our child gets the best chance at being treated fairly if we face this issue personally?

1) WHY SO UPSET ABOUT THIS? I realize even tender-hearted people may not get it and therefore have a little discrimination themselves…I’m not judging, I may have said the same things before I had Ethan. Maybe maybe not. Maybe some facts will help…first of all, I realize that choosing who will receive an organ is a very difficult thing to do. There are always shortages of organs, and it makes it so important to be an organ donor. I grive for ANY child and family who can’t make it because there is no available organ. I realize that overall, doctors may have to consider how long someone will live versus another patient should he or she receive the organ. I want readers to know a few things: People with Down Syndrome do NOT have very short life spans anymore! I didn’t even know this until after I had Ethan. It is now very close to the lifespan of anyone else. So I don’t believe that should be used in saying whether someone should receive an organ or not. Also, realize that you ARE discriminating whether you realize or not when you say you think you know who will have a better quality of life when it comes to Down Syndrome. (If your child has another disability, feel free to comment and share your opinion on that, but I will speak from what I know.) What I believe (as do millions of others) is that “quality of life” can NOT be measured in IQ! It cannot be measured in how fast you can walk or how well you can articulate your speech….Be very careful, medical staff and laypeople, how you place your value of others. Like I said, I used to have a more discriminate view of people with disabilities in years past, so I’m not judging, but trying to educate you because these adults and children are counting on us to stand up for their rights! And they will stand up for theirs as well!

Things like this give me pause to even try to find out about having a child with Down Syndrome ahead of time the next time we are pregnant. (The chances of having another child with Down Syndrome are quite slim, but there is a non-invasive way to test to see ahead of time to prepare for having another one should that be the case. We would only want to know so we would prepare mentally and to get some things in order, such as a prenatal echocardiogram.) If we do the test, are doctors going to be less-willing to help with the baby’s well-being? I know that seems far-fetched and kind of paranoid, but the way some people still discriminate against people with disabilities, I can’t help but wonder!

I guess overall the attitudes that are still alive was a bigtime reality check to how second-classs some people still believe those with Down Syndroem to be in comparison to other people, other children. And that hurts us “to the core” as my husband put it. Here is what he had to say via social media:

“Natalie brought this to my attention tonight. It breaks my heart and cuts me to think that any child is being denied an organ transplant because of a disability or something they are born with. It appears that many kids with Down Syndrome are denied heart transplants because they have Down Syndrome. Doctors won’t come out and say this is the reason, but other children get what they need while our’s die. This is simply unacceptable. A child in need should never….ever….ever go without a heart or organ if there is one available. I would gladly give mine to my son if he needed it and I could. Please help us make things equal for all children including those with Down Syndrome. Life as a person with Down Syndrome is seldom easy why should they have to worry about this? If I could have 1 wish for my birthday any wish at all I would ask that everyone would stop looking at Down Syndrome as a disability, and seeing in our children what they CAN”T do. I would love to see the world as a whole look at my son and see him for what he is. He is a beautiful bundle of joy, that like any 2 year old throws a tantrum when mom or dad takes away his toy because its time to eat. He yawns when its time for bed, he loves to help brush his teeth, wash his hair, and walk to his momma and poppa. He needs medical assistance when he is sick and gets it. He gets follow up appointments to make sure he gets the shots he needs; so why is it that he might get denied an organ transplant if he needs one? Is he not just a child with a full life ahead? Are not all children with downsyndrome just children with a full life ahead of them? So why deny them a basic right that every other child has? Please help us make this right! ”

I thought it was very well-said. The petition we shared was via http://www.change.org/en-CA/petitions/president-of-the-united-states-why-are-children-with-down-syndrome-not-considered-for-organ-transplants-2?utm_source=share_petition&utm_medium=facebook&utm_campaign=share_facebook_mobile&recruiter=111647405

2) HAS THE ISSUE IMPROVED AT ALL OVER THE YEARS? It definitely has. But don’t let that stop you from helping by signing the petition and encouraing more awareness and acceptance! The work is NOT done. Just because blanket “no kids with Down Syndrome may receive transplants” policies are illegal, it does not mean subtle decisions by doctors used to discriminate do not happen. They do. Way too much. Once is one too many, and it is far more rampant that just one case.

http://www.cnn.com/2013/11/30/health/disabled-transplants/

The above link is a story of a boy who had been denied a heart and the parents had to work very hard to get him what he needed and to be treated fairly.

http://mn.gov/mnddc/news/newsitems/transplant.html

This is a great source of information about how bad the issue started, what improvements have been made, and steps that be taken to help with getting children what they need, and to be treated equally. It isn’t simple. People get caught in several steps: The doctor makes the recommendation, then the organ must be received, the transplant center can have you on a waiting list….and kids with Down Syndrome seem to be wait-listed longer from what I’ve read. The discrimination can happen at one or more levels, and parents have had to fight tooth and nail, traveling the country to get a “yes” and just be treated equally. So wrong! And these are families with very SICK kids or they wouldn’t need organs in teh first place! This is simply wrong. When I find out more to fight this, by all means I will update and share! So keep your eyes peeled and let me know of any other ways to make this right!

3) WHAT CAN WE DO TO HELP? Share this, advocate for people with special needs, spread your knowledge and assurance that these kids and adults DO have a life worth living and also a right to living, as much as anyone else. Attend a Buddy Walk in your area in October/Down Syndrome Awareness Month! ndss.org to find a Buddy Walk in your area.

4) WHAT CAN I DO IF MY CHILD WITH DOWN SYNDROME OR ANOTHER DISABILITY SEEMS TO BE PASSED OVER FOR A TRANSPLANT UNFAIRLY?
The link below has information about people with disabilities and how they can manage transplants.

http://rwjms.rutgers.edu/boggscenter/products/documents/TransplantPampletFINAL6-11.pdf

Also see http://mn.gov/mnddc/news/newsitems/transplant.html that was also shared above. Very detailed steps.
http://blogs.kentplace.org/bioethicsproject/2014/02/10/allocating-organs-syndrome-compliance-scapegoat/

Appears to be a good essay on the information given, including addressing the early case in 1995 of Sandra Jensen but is an overall argument for the ethical problems.

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