Transplant May Be In Sight For Girl With Intellectual Disability

[The Straight Story]

Transplant May Be In Sight For Girl With Intellectual Disability


Weeks after claiming their 3-year-old was rejected for a kidney transplant because she has an intellectual disability, a New Jersey couple said the transplant may go through after all.

Chrissy and Joseph Rivera said in an interview with The Philadelphia Inquirer this week that doctors at the Children’s Hospital of Philadelphia are now considering a transplant for their daughter, Amelia.

Earlier this month, Chrissy Rivera wrote in a blog post that a doctor at the Philadelphia hospital told the family that a transplant would not be possible because the girl is “mentally retarded.” Amelia was born with a rare chromosomal disorder called Wolf-Hirschhorn syndrome that’s marked by the presence of intellectual disability, developmental delay, seizures and distinct facial characteristics.

Rivera’s post went viral and more than 37,000 people have signed an online petition asking the hospital to rethink the decision.

http://www.disabilityscoop.com/2012/01/31/transplant-may-be-in-sight/14882/

[HopeHoops]

1. I have a niece with a similar condition (at least by description).

They haven't given a name to it, but the description fits. A child is a child, whether they're beauty queen material or someone like my niece or Amelia. Everyone deserves the same opportunity to live.

[jody]

2. Given a waiting list of 112,769 and 23,745 transplants January - October 2011 it puts rationing

health care in perspective.

Don't know the answer but society cannot fund every medical procedure for all patients.

I know the pain in such cases because I lost my beloved wife of 47 years to end stage renal disease while waiting for a kidney transplant. That was November 2003.

Jody

[jwirr]

3. You are correct but it should not be based on who you are. It should be based on the health of the

recipient. Physical health not mental ability. I remember when Mickey Mantle got a heart transplant at some Texas hospital and he was dying of some disease. My objection was not that he was an alcoholic but that he was terminal.

[REP]

4. Family is planning to donate organ (living donor)

The hospital can't comment on this case, but they don't deny transplants because of a patient's intellectual disability but if there are other factors that make the transplant unlikely to be successful (general health, other conditions, etc).

[jody]

5. Understand. My late wife's two sisters and two brothers all offered kidneys but my wife's immune

system would have rejected even sibling donations.

There is no one answer or even easy answer to rationing health care.

[REP]

6. I have Primary Idiopathic FSGS and I'm B- - UNOS scares the crap out of me

This family isn't taking an organ out of the system for a child who may not receive much benefit from a transplant - her condition is rare, but that she is in kidney failure so quickly makes me suspect she may have the more severe form of it, but even then, not much is known about the syndrome. I do know people like me - who have no children - are given lower priority by UNOS and my rare blood type (and secondary kidney disease) means I'd better stay Stage III for a good, long time.

I'm sorry for your loss. I have some idea what you both must have gone through and know how lucky I've been.