Sunday, January 15, 2012

Baby Amelia's case it not the only one: Bella Santorum

A tragically true story going viral on the internet is the story of how CHOP refused a kidney transplant to baby Amelia because she is 'retarded', read it in all its horrifying detail  here. 

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?”
The tears. Oh, the damn tears. Where did they come from? Niagara Falls. All at once. There was no warning. I couldn’t stop them. There were no tissues in conference room so I use my sleeve and my hands and I keep wiping telling myself to stop it.
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.

Health Care for Gunner Press Conference
I wish I could say it was an isolated case, but it seems to be standard procedure that our less-than-perfect children are excluded from medical treatment given to normal children. Because of their so-called 'low quality of life'.
But who determines that? Panels of doctors, soon to be replaced by government bureaucrats (which Sarah Palin called "Death Panels") if Obamacare continues without the Supreme Court striking it down. At least Amelia's doctor knew her. These bureaucrats will be in some office building in DC making life-or-death decisions for my child with Down syndrome.
They obviously haven't read the article by Dr Brian Skotko in Medical Genetics where he describes the results of his survey of satisfaction in families with a member with Down syndrome. Respondents say that 99% are happy with their child with Down syndrome, and 99% of the children are happy with life. Even 89%  the siblings report that they are 'better people' for having a special needs sibling.
I know this, my daughter Christina is nine and her two older sisters, her father and I grateful to God for the positive changes she has brought to our home, just by being herself. We can't imagine life without her and, yet we have had to fight sometimes for her right to exist. I co-founded KIDS (Keep Infants with Down Syndrome) to call attention to this fight for life of children with Down syndrome. From the moment they are diagnosed in the womb to their last breath, there are medical personnel who argue their live are not worth medical treatment.

It happened to the Santorums. Their daughter Bella has trisomy 18. When she left the hospital after her birth she was on oxygen. Her doctor tried to put her on hospice care at home with NO oxygen. Was she dying? No! She has a condition deemed 'incompatible with life'. Statistically speaking, she shouldn't be alive now. Only ten percent of babies with Edward's syndrome make it to birth, and of those, only ten percent make it to their first birthday. Statistics were stacked up against Bella Santorum. But she has fighters for parents!

Attorney and neo-natal nurse Karen Santorum, aka Mother Bear stood up. . . and Bella got oxygen. Three years later she is the heart of the Santorum home.Watch Rick's testimony about Bella's birth at the Thanksgiving Family  Summit.

Read Rick's other story about Bella, "Two Years Worth Every Tear" in my book "A Special Mother is Born".

That's what motivated me to join Kristin Hawkins in her Health Care for Gunner press conference in September 2009. Parents of special needs children and adults with special needs joined Reps Cathy McMorris Rodgers (R-WA) and Trent Franks (R-AZ) to state our concerns that Obamacare may have to be rationed and that we feared our children would be denied health care. It was covered by the AP and in dozens of news outlets around the nation. But Obamacare passed by the slimmest of margins, and is the law of the land. 
Unless we elect a man like Rick Santorum who has walked in our shoes as parents of special needs children, and promises not only to overturn Obamacare but to be an advocate for vulnerable children like Bella Santorum and Christina Velasquez in the White House.

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pdf said...

God be with you and your work Leticia!!!

Anonymous said...

Sorry God sent to you retarded kid, but she needs to take a dirt nap and quit draining the taxpayers.