Three-year-old Amelia Riviera of New Jersey was recently denied a kidney transplant by a doctor with The Children’s Hospital of Philadelphia. According to her parents, the sole reason for the denial is because the child suffers from mental disabilities due to Wolf-Hirschhorn Syndrome.
Wolf-Hirschhorn Syndrome was first described in 1961. The disorder is rare, caused by the partial deletion of chromosomal material. Those suffering from WHS can experience mental retardation, seizures, heart defects and kidney failure. Because of this, it is likely that Amelia will need a kidney transplant within the next year.
Amelia’s mother, Chrissy Riviera, first wrote on her blog about CHOP denying the transplant based on her daughter’s intellectual impairment. She was later interviewed by CBS, claiming the same thing.
“We were told many times throughout the meeting that she cannot have the transplant because she’s considered mentally retarded,” Rivera told CBS Philadelphia. “I said, so you’re saying in six months to a year when her kidneys fail you want us to let her die? And he said yes.”
According to CBS, the hospital also told Riviera that the transplant medications would likely interfere with her seizure medication and that it was likely she would need another transplant in the future.
There are many things taken into consideration when deciding whether or not someone is a suitable candidate for a kidney transplant. They must be healthy enough to survive the surgery, be able to go through dialysis and comply with post-transplant treatment. This requires taking a lot medication and watching closely for signs of organ rejection.
In Amelia’s case, someone would need to agree to watch her around the clock, make sure she is taking all required medications, etc. But such is the case with any three-year-old; the fact that she is mentally disabled is only secondary. Her parents would surely be willing, but she was still denied, even if the kidney came from a family member.
The news of this spread throughout the country and sparked a quick reaction. A petition was started on change.org to get the hospital to reconsider the decision. There are currently 34,445 supporters and counting.
New Jersey Senate President Steve Sweeney announced his plans to introduce a bill that would make it illegal for any New Jersey hospital to deny health care based on mental disability. He has a daughter with Down Syndrome.
While the community is in outrage and calling for action, this story remains undeniably one-sided. The complicated part about someone’s medical treatment ending up in the news is the inability for those performing the treatment to comment based on doctor-patient confidentiality. If CHOP were to comment on their reasoning behind denying Amelia’s transplant, they would be breaking the law.
All they can do it make general comments on their overall practice, such as what they stated via their Facebook page:
“While we remain unable to comment on individual CHOP patients or cases due to laws that protect patient privacy, we wish to state again that we do not disqualify potential transplant candidates on the basis of intellectual abilities. We have transplanted many children with a wide range of disabilities, including physical and mental disabilities.”
What we’re left with is an unfortunate situation that we don’t have the entire truth on. While I believe denying someone medical treatment based on mental disability is wrong and my initial reaction at learning about Amelia being denied a transplant is one of disgust, I won’t pretend to know all the facts in the case as there is an entire half missing.
All we have is the word of two passionate parent’s wanting to save their daughter’s life.
“It should be left up to the doctors, they know the facts of the case and we don’t,” said junior business management major Ashley Pierson. “But if it’s based just on the fact that she is mentally disabled, then I think it’s wrong.”
I don’t think any doctor should be able to determine what someone considers a “good-quality life.” Even though Amelia is at risk to have a much shorter life span than average, if a family member is willing to donate a kidney to extend her life, her disability should not be a factor.
While I’m sure this case will lead to the strengthening of legal protection for the mentally disabled, it leaves me torn between compassion for Amelia and complexities within the medical field. Not knowing the whole story is a fact that must be accepted by the public, but it comes down to basic human rights and not treating anyone like second-class citizens because of a disability. In the end, I wish her and her family the best in the proceedings to come.
Hannah Webster can be reached at hannahkarine31@gmail.com.
I feel really bad for the little girl and her family. But even if a family member is willing to donate a kidney, it isn’t always possible. There are many factors to consider, and they may not be a good enough match. In that case, wouldn’t it be better to give the kidney to someone with a better chance of a successful transplant and a longer life? Someone who won’t need yet another transplant in the future?
The organ recipient list is long, and I think organs should be given out based on likelihood of a successful transplant, not on mental ability.