Friday, January 20, 2012

I'm disgusted!

Yesterday I had started a post about it being 18 months since Luke and I started trying to have a baby.  I even figured out how many minutes of my life that had been lost due to infertility, but then I read an article a friend posted on facebook.  I was disgusted.  All the sudden my burden of spending the last year and a half trying to conceive was no longer important to me.  The article I read was the sole focus of my heart and  my mind.

The article was about a mom and dad who has a little girl that has Wolf-hirschhorn Syndrome.  They had taken her to the Children's Hospital of Pennsylvania for her normal visit.  The mom had asked the daughter's doctor about the transplant that her daughter was going to need, and the doctor said that the little girl wouldn't need it for another year or so.  So, after the little girl did the tests that needed to be done, the parents met with the transplant team to talk about the transplant process.

Here's an excerpt from the article.

The doctor begins to talk and I listen intently on what he is saying. He has a Peruvian accent and is small, with brown hair, a mustache and is about sixty five years old. He gets about four sentences out ( I think it is an introduction) and places two sheets of paper on the table. I can’t take my eyes off the paper. I am afraid to look over at Joe because I suddenly know where the conversation is headed. In the middle of both papers, he highlighted in pink two phrases. Paper number one has the words, “Mentally Retarded” in cotton candy pink right under Hepatitis C. Paper number two has the phrase, “Brain Damage” in the same pink right under HIV. I remind myself to focus and look back at the doctor. I am still smiling.

He says about three more sentences when something sparks in my brain. First it is hazy, foggy, like I am swimming under water. I actually shake my head a little to clear it. And then my brain focuses on what he just said.

I put my hand up. “Stop talking for a minute. Did you just say that Amelia shouldn’t have the transplant done because she is mentally retarded. I am confused. Did you really just say that?”

I point to the paper and he lets me rant a minute. I can’t stop pointing to the paper. “This phrase. This word. This is why she can’t have the transplant done.”


I begin to shake. My whole body trembles and he begins to tell me how she will never be able to get on the waiting list because she is mentally retarded.

A bit of hope. I sit up and get excited.

“Oh, that’s ok! We plan on donating. If we aren’t a match, we come from a large family and someone will donate. We don’t want to be on the list. We will find our own donor.”

“Noooo. She—is—not—eligible –because—of—her—quality– of –life—Because—of—her—mental—delays” He says each word very slowly as if I am hard of hearing.

When I read this I cried.  I hurt for this family.  It's not fair what is happening to them, and consequently to their little girl!  Just because the little girl has mental delays and is "mentally retarded," it doesn't mean that she doesn't deserve the right to live a healthier life.  I wanted to call every news crew from here to moon and tell them what an injustice the Children's Hospital of Pennsylvania was doing to the little girl and her family.  Sadly, the mom went on to say that after she left the hospital that day, she did some more research and found out that this kind of thing happens all the time all over the states. 

I cannot imagine what it's like to raise a special needs child, and I can only hurt for them knowing what they're facing.  I would like to think that if this were to ever happen to me, I'd fight for my child, and I would want others to spread the word about the injustice the doctors are doing!  So, I'm doing my part.  I'm sharing this story with you in hopes that you'll share it too.  Hopefully it gets to the right people, and something will turn around for this hurting family.

Will you speak up, with me, for those who can't speak for themselves?  If so, please read the entire article. Post it on your facebook, tweet about it, blog about it.   This kind of thing should NEVER happen.



  1. I heard about this on the news too (in Chicago). Have there been any updates to their situation? They were smart to bring the issue to the press -- I'm hoping they can find another doctor to do the transplant now!

  2. That is absolutely sickening! I hope all the press exposure will get enough people in an uproar and create some change! I'll be sharing the article on facebook for sure.

  3. Did you know that the new doctors don't have to take the Hippocratic oath? That is how they are getting around abortions and in some cases euthanasia which they are currently trying to legalize. This doesn't surprise me at all. We are following the same path that Holland has. Soon it will be mandatory to abort and abnormal fetus or let the old die because they are a "DRAIN" on society. Sickens me. I'll pass this on.

  4. That child is a living, breathing human being, the same as anyone else.

    Janie Junebug

  5. When they wouldn't operate on Zeke until they thought he wasn't mentally disabled . . . That was terrible. I feel so bad for these people.

  6. First of all, I want to thank you with all of my heart for thinking of me, and including my baby in your prayers. I seriously cried reading your comment. It means so much to me knowing that this lil one has a fighting chance, and people rooting for him/her. Thank you so so so so much Alecia! Also thank you for sharing this post. You have so much compassion for others, and I'm definitely going to share this. I hope they get the help their child needs! Lets pray for them too<3

  7. Alicia* stupid phone. Btw, yes I do have skype, and some of the other things you asked about:)

  8. This makes me so sad. I agree with have such a huge heart! It's a beautiful quality. I hope you and the hubs have a wonderful weekend!
    Lots of love and prayers! Xoxo

  9. I've gone to several blogs that have reposted this already today. Thanks for pulling attention to it.

  10. Are you serious? Because the child has a mental handicap they won't put her on the donor list??? She's a living breathing HUMAN BEING THAT CAN FEEL! This really does make me angry and I will pass it on. That's Awful!!!


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