Saturday, January 14, 2012

Quality of Life

That's a strange phrase for some to hear. "Quality of Life." Yet, it's one that has passed my lips several times in the last 3 or 4 years. Quality of Life. Who decides, exactly, what that means? Certainly not the Ukrainian hospital, who 5 years ago told two very scared parents that their newborn baby girl would have "no quality of life". Because of their words, those parents left that baby... alone. In a hospital. A month later, she was moved to an orphanage... and her parents never saw her again.

The director of the orphanage again said, "no quality of life" and on her 4th or 5th birthday, that baby would be moved out of her baby home and sent to an institution. It would be dark, and cold, and dirty. She would not receive medical care or much food or water. She would be left tied to her bed, not allowed to run outside, like most 5 year olds love to do. There... in that institution... she would then truly have had no "quality of life". 

Thankfully, God spoke to our hearts and told us, "Go get your baby. She needs you." And two years ago, we did just that. But there are small children in other countries all over the world who are suffering the fate of an institution, just because they have a physical or mental handicap. They are robbing these children of their "quality of life". 

Then there's Amelia Rivera. She has Wolf-Hirschhorn Syndrome. If she doesn't get a kidney transplant, she will die. Plain and simple. But unlike all the children I spoke of earlier, Amelia lives here, in the United States. She lives in a country where children with disabilities thrive. The most diverse country in the world. You see handicapped parking spots at every store. Almost every school has accommodations for children with Special Needs. There are programs and developmental doctors and therapies to help them thrive in every area of their lives. How lucky for Amelia that she was born here! Right? 

Wrong. 

You see, Amelia's doctor at the Children's Hospital of Philadelphia, has decided that Amelia Rivera does not qualify for a kidney transplant. This is not because she's too sick and wouldn't survive - she would. This is not because she doesn't have health insurance - she does. Her doctor's reason for denying Amelia this life saving surgery is because HE believes that Amelia has "no quality of life". 

Amelia Rivera

Imagine how her parents felt, sitting in a room at the hospital hearing a doctor tell them that their daughter shouldn't be alive. She's not worthy of "saving". She's better off dead. 

And when her parents said they would fight for their child, they said, "I have been warned about you. About how involved you and your family are with Amelia." 

Warned. About parents who are TOO involved with their child. Warned about parents who want their little girl to live. Warned about parents who want the same medical care for their child as any other child in the United States. 

Shame. On. Him. 

When doctors get to decide whether or not a child is "worth" a donated organ, when they can look a parent in the face and tell them to just let her die, we are NO better than Ukraine or Russia or Serbia or any of the other countries who lock children with SN away and let them die. Children's Hospital of Philadelphia should not be able to get away with this, and this is my plea to help the Rivera family in the only way I know how. 

There is a petition here that hundreds of parents have signed already. Will you please go sign and let CHOP know this is NOT ok? Will you go to CHOP's Facebook page, and let them know again that this is NOT ok. Ironically, their motto is "Hope Lives Here" apparently only if you're a typically developing child... who will have "quality of life". Let's be loud. Let's stand together for Amelia, and for all children in this country with special needs. And let CHOP know how much quality our kids really have. 

God bless you, Rivera family. Thank you for being amazing advocates for your daughter! I hope she has many, many more years here on this earth. 

17 comments :

Island Baby said...

Why doesn't the family just go to another hospital to get better care and a transplant ?? This is ridiculous to hold treatment based on one doctor's opinion!!!

Notsopc said...

How horrid..

ourjoyfulljourney said...

That is TERRIBLE! I pray a doctor steps up and helps them!!!

Regina said...

I just signed the petition! Makes me very sad that our country can't offer better than this...

Joeymom said...

Just going to another hospital doesn't excuse or dismiss the behavior of the doctor at CHoP. Trying to get into another hospital can also take a long time- it took us 6 months just get an initial appointment for my son in hospitals here for his special needs.

We as a society should not stand for this. We should not tolerate a meeting that devalues a child because of a disability- for any reason, and all the less in a meeting about life or death.

debi9kids said...

beautiful and heartbreaking post.

I too am completely disgusted by CHOP for this, as they treat my severely disabled son in their autism clinic.
What hypocrites!

Good for you for spreading the word too!

Holly Aytes said...

That is horrible! I am absolutely disgusted at the treatment this family is getting! I signed not only the petition but also went to the fb page. I don't know if I would want those dr's anywhere near my child after that but if that is the only place to get the transplant done the quickest then I guess staying there is the only option! I hope things turn out good for them and that the dr is punished in some way!

Janet said...

I have stormed the page and signed the petition. I. Am. Disgusted. If you look in the photos section of their FB page I added a collage of other kids with this syndrome. ALL who should be as valued as any doctor at that hospital.

http://mylittlewarriorprincess.blogspot.com/

trooppetrie said...

this is the craziest thing I have ever heard. makes me want to scream. We donated my brothers organs 15 years ago and it would kill me if they said that precious blessing would not be eligble

Heather said...

I posted about this too; it brought me to absolute tears. You've got me thinking, Renee...about Kellsey and how she was deemed "worthless" by the society she was born to. We are NO BETTER right now than all of those former Soviet bloc countries. NO BETTER. Not if we don't stand up for our citizens with special needs and say "they are people too".

Jackie Mulholland said...

I also made a post on my blog earlier. This is so disturbing. I cannot believe that in the year 2012 in the United States people still have the logic that SN's is something to fear. How can this doctor who is in the business of SAVING lives think this is ok? Who is he to think this child's life is not worth living? I am so upset by this, it has bothered me everyday since I saw the post. If this were my child I think I would have beaten the man. My thoughts and prayers to the family and sweet Amelia.

Cayla said...

I signed the petition, commented on the facebook page, and emailed every major media outlet (locally and nationally).

harris family journeys said...

I just cannot believe this. Really I cannot believe in this day and age and in THIS COUNTRY we are facing this type of discrimination towards our children and this child is OUR CHILD. Thank you dear friend for your beautiful post and for always staying on top of issues that affect our beautiful children. This actually affects the future of humanity.

Melissa said...

Renee I signed the petition as well, so hard to think that in the USA and in 2012 this can happen.


Also do not know if you had heard that Aaron Shust wife delivered a baby boy at 37 weeks in NICU diagnosed with Down Syndrome and AV defect waiting on surgery.

Lynn said...

I just don't even have words!
Praying!
Hebrews 6:17-20 Wherein God, willing more abundantly to shew unto the heirs of promise the immutability of his counsel, confirmed it by an oath: That by two immutable things, in which it was impossible for God to lie, we might have a strong consolation, who have fled for refuge to lay hold upon the hope set before us: Which hope we have as an anchor of the soul, both sure and stedfast, and which entereth into that within the veil; Whither the forerunner is for us entered, even Jesus, made an high priest for ever after the order of Melchisedec.
Prayer Bears
My email address

Andrea S. said...

Speaking as a person who is not a parent but who myself has multiple disabilities (deaf, attention deficit disorder, and others), I find it distressing that doctors are so often entrusted to judge the "quality" of lives they know so little about.

You see something similar with deaf children where doctors who know NOTHING about linguistic development try to tell parents that using sign language will harm their child's ability to learn English or learn to speak (NOT TRUE AT ALL!! Sign language will in fact HELP them learn other language skills and will give them one more way to communicate--as a deaf adult I use many different ways to communicate in different situations--either speaking or writing in English or in Spanish, or using American Sign Language ... I use WHATEVER WORKS. And if you're deaf, you need MORE communication tools in your toolkit, NEVER FEWER. I use so many approaches to communication because there is NO SUCH THING as a one size fits all situations communication tool. But doctors who understand NOTHING about the real lives and the real communication challenges of deaf adults and children presume to think they know enough to tell parents how to raise their deaf child!

I know a woman on-line who is autistic and has various other additional disabilities who has written about the way people just assume she has no "quality of life" -- but in fact she very much values the richness of her life. Read what Amanda Baggs says about the quality of life at http://www.myspecialks.com/2012/01/quality-of-life.html, Then go explore her excellent blog at

ballastexistenz.wordpress.com

An organization "Not Dead Yet," run by adults with disabilities is campaigning to educate medical personnel and the general public that, no, a disability does not diminish the ability to appreciate life and, YES, the lives of people with disabilities ARE worth living. (Some people with disabilities have had others tell them "I'd rather be dead than disabled like you"!! No one should have to hear something like that.) They have blogged on the Amelia Rivera situation at
http://notdeadyetnewscommentary.blogspot.com/

I've also blogged on the Amelia Rivera situation and signed the petition. Good luck, all, with the struggle--not just to save Amelia Rivera but to find a way to educate doctors that ONLY PEOPLE WITH DISABILITIES OURSELVES are qualified to judge our actual quality of life--NOT DOCTORS!! And, to find a way to educate doctors to consult more closely with people with disabilities OURSELVES, as well as with the people who love us, instead of assuming that they can judge a person's quality of life (or value of life!) just by looking at a diagnostic label. We need systematic change in the way that medical personnel and people of the general public understand what it really means to live life with disabilities, or to live life as parents or other family members of people with disabilities.

Jess said...

Tag! You're it! http://unsuppressedjess.blogspot.com/2012/01/tag.html