An Amelia Update

Sometimes I write and I think that perhaps I am the only person out there reading what I've put down.  That is why your comments and emails are so encouraging.  I also love it when people come up to me and say they read the blog.  Because of Joey's extra chromosome we have met so many amazing people and we have learned so much.  He has made us better parents, better humans-- better people.  Some people say, "The blog must be such good therapy for you."  I guess I never thought of it that way.  I just love to write and to research and so the blog seemed to be a good fit.  Since having Joey I have also become passionate about spreading information and awareness about Down syndrome.  Joey's life has taught us so much about life and living that I hope his struggles as well as his triumphs can help inspire others.  


Speaking of inspiring others, one of my friends asked the other day, "What happened to Amelia?"  You may remember, back in January, a little girl who has Wolf-Hirschhorn was denied a kidney transplant partially in part because she was considered "mentally retarded." 


I am so excited to tell you that CHOP apologized to Amelia and her family.  Here is the whole story as reported by News Medical.

By Dr Ananya Mandal, MD

Children's Hospital of Philadelphia has issued an apology to the parents of Amelia Rivera, a disabled three-year-old girl who, according to her parents, was initially denied a chance at a kidney transplant because she is “mentally retarded.”

In a statement released jointly with Joe and Chrissy Rivera today, a hospital official also promised to review the way the hospital handles such cases. And Amelia's possible transplant is now under consideration, as her parents have previously reported.

Amelia has a genetic disorder called Wolf-Hirschhorn syndrome. It causes intellectual delays, seizures and other health problems - and in her case has led to a kidney condition that could kill her in six months to a year, her parents say. They say they hope to find a family member or other living volunteer to donate the organ.

Michael Apkon, senior vice president and chief medical officer said, “As an organization, we regret that we communicated in a manner that did not clearly reflect our policies or intent and apologize for the Riveras' experience.” He added, “While we can unequivocally state that we do not disqualify transplant patients on the basis of intellectual ability... this event underscores the importance of our responsibility to effectively communicate with families.”

This is the first direct statement the hospital has made about the case, which became an online cause for tens of thousands of people after Chrissy Rivera blogged about a meeting with a doctor and social worker there. She wrote that the doctor came to the meeting with the words “mentally retarded” and “brain damage” highlighted on two pieces of paper and insisted that Amelia's mental delays made her ineligible for a transplant.


In today's statement, the Riveras say, “Despite an unfortunate encounter a few weeks ago, we hold The Children's Hospital of Philadelphia in high regard. We've had a three year relationship with the hospital and are pleased with the care that Amelia has received.” If their daughter can be “seen as Amelia, and not as a diagnosis of her mental abilities” it may help other families, they say.

The Riveras

The hospital said that no decision had been made on whether the surgery would be performed. “We are completely committed to the careful review of our processes and written material to ensure that we are sensitive to the needs of all families,” Apkon continued, “including the specific needs of families of children with disabilities.”




Sending prayers and love to Amelia on this first day of Lent.


Happy Wednesday!