According to a blog posted by Amelia's parents, Chrissy and Joe Rivera, they walked into a conference room in the Nephrology department at Children's Hospital of Philadelphia (CHOP) on January 10, 2012, and were expecting to hear about plans to give their daughter the liver transplant she needs to stay alive.
The couple said they knew something was wrong when the doctor sat down across from them and put some papers on the table, both of which had two words highlighted - "mentally retarded" and "brain damage."
Amelia has a rare genetic disorder called Wolf-Hirschhorn syndrome, a condition caused by a missing part of the short arm of chromosome four. This missing genetic material results in severe developmental retardation, a characteristic facial appearance, and can include a variety of other birth defects.
The doctor proceeded to tell them that Amelia is not eligible for the transplant "because of her quality of life . . . because of her mental delays."
A social worker who was also present at the meeting chimed in to say that even if Amelia got the transplant, she'd need another one in twelve years. "And then what?" she demanded of the Riveras. "And do you have any idea of the medications she will need to take to keep her healthy?”
The Riveras reassured her that they had done their homework and knew what would have to be done to properly care for their daughter.
“Well, what happens when she is thirty and neither of you are around to take care of her?" the social worker countered. "What happens to her then? Who will make sure she takes her medications then?”
“Neither of us can predict the future and we shouldn’t try," says Chrissy, a 36 year-old English teacher. "But if Amelia does not have this transplant she has no future!”
Chrissy then confronts the doctor. “So you mean to tell me that as a doctor, you are not recommending the transplant, and when her kidneys fail in six months to a year, you want me to let her die because she is mentally retarded? There is no other medical reason for her not to have this transplant other than she is mentally retarded.”
“Yes," the doctor confirms. "This is hard for me, you know.”
When she demands to see someone else about it, the doctor tells her, "Feel free to go somewhere else. But it won’t be done here" and leaves the room.
The Riveras left the hospital in tears that day, but the New Jersey couple was to experience a different kind of shock in the days to come. After telling their story to the vast online network of special needs parents, one of the most prestigious pediatric hospitals in the world suddenly found itself sitting on the hot seat.
To date, more than 16,000 signatures have been gathered for an online petition at change.org demanding that the hospital allow the transplant. In addition, hundreds of complaints began showing up on CHOP's Facebook page, and more than two dozen bloggers - many of them parents of children with disabilities - have published posts criticizing the hospital.
"That's the special needs community," said Sunday Stilwell, a Maryland blogger and mother of two boys with autism, to USA Today. Although she doesn't know the Riveras, she started the change.org petition after reading the initial post and thinking "that could be my child."
Hospital officials posted several responses on Facebook, one saying they have never denied a child a transplant due to a disability. "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," the hospital insisted. "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."
However, research by USA Today uncovered a study published in 2008 which determined that 43 percent of child transplant programs "always" or "usually" considered developmental delay in transplant decisions. The reason is the scarcity of donated organs and the desire to choose candidates most likely to survive and thrive.
The backlash of negative publicity appears to be working.
Hospital spokeswoman Dana Mortensen told USA Today in an e-mail: "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."
The Riveras now say that Amelia's transplant is "back on the table" although hospital officials declined to comment on plans for a new meeting with the couple.
If not for the proactive special needs community, would Amelia have had this second chance at life?
Maybe not, says David Magnus, director of the Stanford Center for Biomedical Ethics. He told USA Today that Amelia's story is not uncommon. Although he doesn't know Amelia's full medical history and can't judge whether or not she is an appropriate candidate for a transplant, he said "it would be wrong for developmental delay to be the sole basis, morally wrong," and also illegal under the Americans With Disabilities Act.
The search for a donor is now on, and time is of the essence. Amelia could die within six months to a year without the transplant. Right now, she is unable to talk or walk, but does smile and play and interact with people, especially her two brothers who she "loves to pieces" Chrissy says.
She is grateful for the support of so many people who have never met her, saying their efforts on Amelia's behalf are "awesome."
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