Image courtesy of wolfhirschhorn.org

Parenting a child with special needs is tough even under the best of circumstances. However, when that special needs child also has severe medical problems, the job of parenting is made 1000 times tougher and more heart wrenching. Amelia Rivera, a three-year-old from New Jersey with Wolf-Hirschhorn syndrome is one such child. She is in need of a live-saving kidney transplant, yet her parents were told by a doctor at the Children’s Hospital of Philadelphia (CHOP) that she would not qualify for it due to the fact that she was “mentally retarded” and suffered from “brain damage.”

The Special Needs Community Responds

After attending a meeting last week with a doctor and a social worker at CHOP, Amelia’s parents, Chrissy and Joe, were outraged. Chrissy, an English teacher, immediately fired off a blog post that has gone viral among the special needs community. An online petition was started at change.org which has so far collected over 16,000 signatures.

In addition, parents and advocates for special needs children from around the country have bombarded CHOP’s Facebook page with posts of outrage and pleas for help. Bloggers from across the special needs community have gathered their forces in support of the Riveras and Tweets for #teamamelia have spread the story to others.

CHOP’s Response

At sight of the avalanche that this decision has caused, CHOP has responded both to the press and their Facebook fans. Explaining first on Facebook that,

Transplant programs at CHOP have never declined a patient for transplant based solely on their cognitive status and we have performed transplants on many children with disabilities. … We make all decisions regarding eligibility using a non-discriminatory approach, after a multidisciplinary assessment and discussion, which is the standard of practice throughout the country

Later on last week, CHOP spokeswoman Dana Mortensen continued to defend the hospital with the following email:

The term ‘mental retardation’ is not used in any information regarding appropriateness for transplantation. The term ‘progressive irreversible brain damage’ has been used, and we are currently reevaluating this language given the potential for misunderstanding of our intent

Regardless of these explanations, however, the damage is done. People are outraged at the comments allegedly used by the doctor and social worker who spoke to the Riveras as well as the overall idea that mental status can determine transplant eligibility.

Not as Simple as it Seems

The outrage felt by the many special needs families who support the Riveras is clearly understandable. However, the issue surrounding organ transplantation is not as simple as it may at first seem. Though, the Rivera Family contends that the donor for Amelia would be a live donor and likely a family member, one of the greatest concerns regarding transplantation to individuals with disabilities surrounds the scarcity of organs. Doctors, faced with an overwhelming need and an extremely limited supply of organs, must make the decision that they believe will give the best boost in quality of life. Oftentimes, special needs individuals do not fall into that category, particularly those who suffer from developmental and cognitive delays.

Even so, Chrissy Rivera claims that the doctor at CHOP refused to recommend Amelia for a live donation citing the difficulty of keeping up with post-transplant medication. His feeling was that though her parents would take care of her needs in the present, over the long term, post-transplant care was outside of Amelia’s abilities.

Is it Right?

As advocates for special needs students, the readers here on CW will likely agree with the Rivera family, and certainly the Americans with Disabilities Act is on their side as well. However, the greater question here is whether the decisions of the doctors at CHOP were in the right vein, albeit poorly delivered, or whether or not the chance at life, no matter its quality, is worth the fight.