Denied Kidney Donor Because of Mental Disability

Amelia 'Mia' Rivera has Wolf-Hirschhorn syndrome, which is a complex genetic disorder that causes mental and physical disorders. His family said that in three years he would die if he did not get a donor kidney in six months to one year ahead.

Mia's mother, Chrissy Rivera said that the family is willing to donate kidney to live. Unfortunately, Children's Hospital of Philadelphia said that they would not recommend a transplant for a toddler because his disability is.

35-year-old Rivera was later to write about the suffering of his daughter via a blog. Currently, he has received more than 20,000 online supporters from 15 states who filed a petition to the hospital to be willing to give kidney to Mia to survive.

When Rivera and his family went to the hospital the child to discuss the transplant, Rivera thinks that he just needs to figure out how to work the transplant and how he could be a donor.

"I do not think it would be a problem. But then, I was told that we were not able to be a donor because he was mentally retarded. That is the words written on a piece of paper," said Rivera who works as an English school teacher from New Jersey. He also has two other children aged 11 and 6 years.

Rivera said that the doctor also mentioned that the drug must be taken by Mia for the rest of his life and emphasized how important drug for the survival of Mia.

"But who will make sure he always drank the medicine ketikal we no longer exists. Everyone should be treated equally. It is outrageous," said Rivera.

Approximately 35% of children with Wolf-Hirschhorn syndrome do not survive beyond the age of 2 years, but few people can live into adulthood. Rivera said that Mia still has about six months to a year without a kidney transplant.

Responding to various criticisms, the hospital admitted will not want to respond to any questions. But it only gave a written statement on its official site as follows:

"Children's Hospital of Philadelphia does not disqualify potential transplant candidates on the basis of intellectual ability. We have to transplant many children with various disabilities, including physical and intellectual disabilities. We are committed to providing the best medical care for all children, including those who experience all forms of disability" .

R. Alta Charo, a professor of medical ethics at the University of Wisconsin, CHOP responded that the statement was not aimed at Mia's response to disability, but only gave responses in accordance with the norms prevailing at this time.

"Doing the transplant is medically dangerous is a very appropriate action. But if the denial is based on the presence of mental retardation, it would be a setback in the practice of medicine since 40 years ago when Down syndrome children were allowed to die due to lack of treatment," said Charo.

Wolf-Hirschhorn syndrome affects one in 50,000 live births. Health disorders can vary in each child, but some serious disorders such as seizures, hearing loss, eye malformations, and abnormalities of the kidneys, brain and bones. Heart disease, lung infections, and reduced immune systems are also often reported.

According to the American Society of Transplant Physicians, patients may be denied to get organ transplants because of various reasons. Transplantation may not be offered to patients who could be threatened because of the surgery itself or by the immune system-suppressing drugs needed to prevent organ rejection.

Patients who have a weakened immune system or a high risk of infection, such as children with Asperger Syndrome Wolf-Hirschhorn, should not be given drugs suppressing the immune system.

Some physicians have reported that patients with this syndrome have problems with anesthesia because the head and mouth tend to be small, making it difficult to put a breathing tube during the surgery.

Patients who develop severe heart disease also have a very high risk during surgery. Also, someone who is not expected to survive for five years can also be turned down to get a kidney transplant. But patients who have severe intellectual impairment could be considered for transplantation if the benefits outweigh the risks.

Currently, Mia could not walk or talk and fitted with digestive tube because he could not feed themselves. Rivera said that he believed the study of Wolf-Hirschhorn syndrome has expired.

"There are many people with this syndrome over the age 60-something years, and many of them reach adulthood in their 30s, 20s, and 40s. Every mother wants the best for her child and would do anything to get it. Mia can not be blamed for this. He did not ask for this syndrome and that we ask is the right to a fair medical treatment, "said Rivera.