Highs, Lows, and a Girl Named Amelia

January 17, 2012 · 7 comments

in Things to Think About

Friendship. Inclusion. Equality.

For all of my talk about “more alike than different,” one crucial element about our family is very different from families with only typical children: the fight for acceptance, inclusion, and equality for our differently-abled kids.

In our world, the highs are extra high; the lows are extra low.

Last week, Nathan and I spent six days at Walt Disney World for marathon weekend. We stayed in Winter Garden with our like-family friends, the Rileys, and met up with many more friends from all over the country who are members of Running of the Ears (ROTE), an online community for runners who love Disney.

A large contingent of ROTErs had dinner together on Sunday night, and by the time dinner was over, I recognized a pattern – everyone who came by our table to visit came to see Nathan, and most of them ONLY came to see Nathan.

These folks aren’t people who have kids with special needs. They are typical people – people who happen to be my friends (most of them predating Nathan) who have embraced him just as he is. Figuratively AND literally. :)

It was a great week of living in the friendship bubble.

The week that we left for Disney, the news broke about Target’s quiet inclusion of a child with Down syndrome in their weekly ad. He was included just as he should have been, without a press release or fanfare of any kind – in fact, all of the “buzz” about the ad originated from parents like Noah’s dad.

The Target ad was one of the highs – a snapshot of the world as it should, and could, be.

Unfortunately, the real world falls far short of the Target ad and the friendship bubble. Consider the case of Amelia “Mia” Rivera, a three-year-old girl with Wolf-Hirschhorn Syndrome, a rare chromosomal abnormality, who became an overnight blogosphere celebrity, and not in a good way.

Amelia needs a kidney transplant. If she doesn’t receive one within six months to a year, she will die. Last Tuesday, her parents arrived at Children’s Hospital of Philadelphia (CHOP) for what they thought was a meeting to discuss their daughter’s transplant options. Instead, the Riveras were told that Amelia would not be recommended for a transplant, even if a kidney was donated by a family member.

According to the Riveras, the doctor told them that Amelia would not qualify for a transplant because she is “mentally retarded” and has “brain damage.” When questioned further by the Riveras, her “quality of life” was also cited. 

The case of Amelia Rivera is disturbing.

Organs are scarce, so on some level perhaps it seems reasonable to “save” them for individuals who are healthier. Of course, the practical application of that assertion means that doctors are in the powerful position to choose winners and losers in a deadly scenario that is anything but a game to a patient and her family.

But in Amelia’s case, the scarcity of organs shouldn’t have been an issue. The Riveras anticipated that a family member would donate a kidney for Amelia, so choosing to accept Amelia for a transplant wouldn’t result in the denial of another patient.

Perhaps there were other, more clear-cut, legitimate reasons not to recommend Amelia for the transplant (if there were, the Riveras were given no indication of it). Perhaps, with the medical expertise the doctor and his team have, they are certain that Amelia’s transplant would not be successful.

But of course there’s another option. Time and again, both medical professionals and laypeople have asserted that children like Amelia – and Nathan – are a “burden to society” and that we should “ease their suffering.”

Perhaps the doctor at CHOP doesn’t believe Amelia Rivera’s life is worth saving.

At least once a month, I consider whether I should commit my blog to being more light-hearted and positive. I wonder if my message might be better received if I placed a greater emphasis on the highs – after all, the lows are much more rare. And sometimes I simply grow weary of blogging about “issues.” But then I come across a story like Amelia’s and I remember why I don’t stick to stories of wild toddlers, pierced ears, and kids races.

If I, and others like me, don’t speak up, who will?

Further reading on Amelia Rivera:

Chrissy Rivera’s Account of What Occurred at CHOP

Children’s Hospital of Philadelphia on Facebook

Huffington Post: Everyone deserves a new kidney

USA Today: “Team Amelia” backs transplant for special needs child

NBC Philadelphia: Mom claims CHOP refuses to give special needs child transplant

Note: CHOP has neither confirmed nor denied the account provided by the Riveras (appropriate, given that the case involves private medical records), although they have responded to the public outcry on their Facebook page.

If you enjoyed this post, download my FREE eBook, There's Sunshine Behind the Cloudsa resource for special needs parents. There’s Sunshine Behind the Clouds: Surviving the Early Years as a Special Needs Mom is for every mother of a child with special needs who is at the beginning of the journey, struggling to gain her footing on ever-shifting sands. It focuses on how to not only survive the emotional roller coaster of special needs parenting, but enjoy the ride.
Anna Theurer January 17, 2012 at 12:52 pm

This situation with Mia has left me so disturbed and upset. In reading the original blog post by her parents, they did seek clarification from the doctor on why Mia was being denied the transplant. I know the doctor and CHOP have to follow HIPPA rules, but I have heard across the internet of other families with similar stories.

I say blog about the highs, the lows, and the typical!

Andi January 17, 2012 at 1:02 pm

I was initially hesitant to write about Amelia’s case, only having the family’s story and not knowing if there were perhaps other reasons why she was denied. Ultimately, though, I felt that it was important to talk about it, because even if Amelia’s story isn’t as “bad” as it seems, you and I both know that it’s likely typical of the decision-making that occurs each and every day in the medical community.

Kelley January 18, 2012 at 2:15 pm

I say keep blogging away the highs and lows, because your blog gives the true picture of our lives and it’s nice to know that I am not the only that has the same thoughts. Recently I saw someone I use to work with and told them how I had another baby. They had heard she was born with Down Syndrome and I still got that look of pity. No congratulations on another baby just that look. I really dislike that look. My baby girl is nothing to pity and she is not a burden to our family. She is the greatest teacher our family has ever had and the life lessons she is teaching her sisters are priceless. I wouldn’t trade her or her “extra dose of special” for anything in this world. I recently came across a quote and have no idea who wrote it but it rings so true: “Just Because it’s not what you were expecting doesn’t mean it’s not everything you’ve been waiting for!”

Shasta Kearns Moore January 18, 2012 at 3:02 pm

Yes, please include both. A sappy positives-only blog would be far too one-dimensional — not to mention rob us of your insights and wonderful writing.

Holly January 19, 2012 at 12:23 am

I like the practical side of this blog.Again, you make me think. Perhaps the insurance company was somewhat behind this?

starrlife January 19, 2012 at 7:51 am

Love your blog. You are great and very balanced- as you know I have some disdain for eternally perky :)

starrlife January 19, 2012 at 7:56 am

I feel for any family going thru any kind of this process and I think that at the very least it gives a great platform for discussion about the intrinsic value of our kids. The whole truth is only between the hospital and the family. The discussion is an important one despite being a disturbing one. It needs to happen.

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