The Children’s Hospital of Philadelphia (CHOP) has issued a statement of apology to the parents of Amelia “Mia” Rivera. This apology is not to be taken as an indication that the hospital has made the decision to give Mia the kidney transplant she needs. It is probably more to quell the growing controversy that started after Mia’s mother wrote on her blog about their first meeting with a doctor.
If you have not been following this story, then allow me to catch you up about it. Amelia Rivera is three years old. She goes by the nickname “Mia”. She has Wolf-Hirschhorn syndrome. It is a chromosomal disorder that is caused by a partial deletion of the short arm of chromosome 4.
Symptoms of Wolf-Hirschhorn syndrome include wide spaced eyes, a broad nose, and oral facial clefts (such as a cleft palate). Children with the syndrome also may have small, or asymmetrically shaped heads, heart defects, and seizures. Kids with Wolf-Hirschhorn syndrome also have profound developmental and intellectual delays.
Mia needs a kidney transplant. Earlier this year, Mia’s family met with a doctor at the Children’s Hospital of Philadelphia (CHOP) in regards to her transplant. Mia’s mother, Chrissy Rivera, wrote on her personal blog that the doctor said that Mia was being denied the transplant because, as she says the doctor phrased it, Mia was “mentally retarded”.
This quickly spread across the internet, and caused quite a controversy. Someone created an online petition that demanded that CHOP give Mia her transplant. Since then, the hospital has given the Rivera family a second meeting, and has given them more information about the process that is involved in getting a transplant. It seemed that a transplant was now a possibility for Mia, after all. A final decision has not yet been made.
CHOP has officially apologized to the parents of Amelia Rivera. A statement was released jointly with Joe and Chrissy Rivera and the Children’s Hospital of Philadelphia.
Part of the statement, from Senior Vice President and Chief Medical Officer Michael Apkon reads:
“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 went on to say: “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”.
Mia’s family also had something to say in the official statement:
“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”. They went on to say that if their daughter can be “seen as Amelia, and not as a diagnosis of her mental abilities”, it may help other families.
Image by butupa on Flickr