A few weeks ago, the Children’s Hospital of Philadelphia denied a kidney transplant for Mia Rivera. Her story sparked interest from across the internet. Now, the hospital is willing to consider the transplant.
Amelia Rivera, who is called “Mia”, is three years old. She has Wolf-Hirschhorn syndrome. It is a chromosomal disorder that is caused by a partial deletion of the short arm of chromosome 4. This is the type of disorder that an infant is born with, (and not something that can develop later on in life).
Children who have Wolf-Hirschhorn syndrome tend to have wide spaced eyes, a broad nose, and oral facial clefts (such as a cleft lip or cleft palate). They can also have small, or asymmetrically shaped heads, heart defects, and seizures. Kids who have this syndrome will have profound developmental and intellectual delays.
Mia needs to have a kidney transplant. Her mother, Chrissy Rivera, was working on getting Mia through the process that is involved when a person needs to have an organ transplant. She wrote a very passionate post on her personal blog that describes her experience.
In the blog, Chrissy Rivera made the claim that the doctor said that Amelia would not be put on the transplant waiting list because she was “mentally retarded”. She says that the doctor used that exact phrase. Her blog quickly spread across the internet, gaining a massive amount of support. Someone created an online petition that demanded that Children’s Hospital of Philadelphia give Mia her transplant.
As a result of all the media attention, the Children’s hospital of Philadelphia is now willing to consider Mia for a kidney transplant. The Riveras met with medical personnel from the hospital, and were given instructions about how to proceed with a possible transplant. They were instructed on how to have family member tested as potential live donors.
This does not necessarily mean that Mia will, ultimately, be considered medically eligible for the transplant. The parents are taking this second meeting as a positive sign, and a step forward. Chrissy Rivera says that if it turns out that there is a medical reason why the transplant would be a bad idea, then “of course we’re not going to do it”.
It remains to be seen what will ultimately happen. Right now, Mia is going through the process that is involved when a person needs an organ donation. Potential live donors, (which means other children in Mia’s family) can be tested to see if they are a match to Mia. The family has hope.
Image by Spectacles on Flickr