[blparent] Amelia rivera

[Veronica Smith]

Although a little off topic, I wanted to post the article here for all of us
to share.  It kind of makes a person wonder, what if it was my child, what
if it was an eye enplant or anything else that might help our children.
What if?



Written by
CBS News
 National & World
Amelia Rivera (Photo Courtesy: CBS Philadelphia)
Philadelphia, PA -- Three-year-old Amelia Rivera desperately needs a kidney
transplant
to live. But Amelia's mom, Chrissy, says the Children's Hospital of
Philadelphia
won't let her daughter get a transplant because she is "mentally retarded."
Amelia was born with Wolf-Hirschhorn syndrome, a genetic condition that
affects about
one in 50,000 children. The syndrome is characterized by a distinct facial
appearance
- including a high forehead and broad nose - delayed growth and development,
intellectual
disability, and seizures.
During a regular appointment with Amelia's nephrologists, Chrissy Rivera was
referred
to a transplant team to discuss the kidney transplant Amelia would likely
need within
the year to survive, Rivera wrote on a blog on a Wolf-Hirschhorn support
website.
That's when Rivera reportedly met with a doctor and a social worker who told
her
that Amelia should not have the transplant done because she is "mentally
retarded"
and would not be able to get on a transplant waiting list. When Rivera said
someone
in her large family would donate the kidney - thus bypassing the transplant
list
- the doctor allegedly said Amelia still would not be eligible because of
her mental
delays and quality of life.
"We were told many times throughout the meeting that she cannot have the
transplant
because she's considered mentally retarded," Rivera told CBS Philadelphia.
The hospital
also told Rivera that some of the transplant medications would interfere
with Amelia's
anti-seizure medications, and she might need another transplant later in
life.
"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," Rivera told CBS Philadelphia.
That's when an outraged Chrissy went home and decided to write the blog,
which has
since gone viral. A petition on change.org that demands that the hospital
reconsider
its position has already gotten more than 21,000 signatures.
What does the hospital have to say? "We feel and understand your
frustration, but
we are unable to comment publicly on individual cases," The Children's
Hospital of
Philadelphia said in a statement on its Facebook page. "The Children's
Hospital of
Philadelphia does not disqualify potential transplant candidates on the
basis of
intellectual abilities."
CBS Philadelphia reports the hospital has another meeting with the family on
Tuesday.
What's the official policy on transplants for all people with disabilities?
Turns
out, there isn't one.
United Network for Organ Sharing (UNOS), told CBS Philadelphia that it's up
to the
individual hospitals and their doctors to determine if someone is an
appropriate
candidate for transplantation.
The Washington Post reports transplant centers' policies on considering
transplants
for people with intellectual delays are "all over the map." About 39 percent
of programs
across the country "rarely" or "never" factor intellectual disabilities into
transplant
decisions, while 43 percent "always" or "usually" take intellectual
disabilities
into account, according to the paper.
Dr. Arthur Caplan, professor of medical ethics and health policy at the
University
of Pennsylvania, wrote in a commentary on MSNBC that morally, this is a
sticky issue.
"Those being considered for a transplant must be able to comply with what is
required
after a transplant - taking a lot of medicines and watching out for early
signs of
rejection of the transplanted kidney," Caplan wrote. "This means that those
with
severe mental impairment need willing, round-the-clock helpers so that the
transplant
has a reasonable chance of succeeding."
Caplan said some mental disabilities are linked to genetic problems that
could affect
other organs and shorten lifespan. Because of that, he said, transplant
programs
sometimes won't operate on patients who face a shortened lifespan, when
there is
such a huge need for transplants among other children.
"There are reasons why anyone with an intellectual or physical disability
might not
be considered a good candidate for a transplant," Caplan said. "But those
reasons,
to be ethical, have to be linked to the chance of making the transplant
succeed.
Otherwise they are not reasons, they are only biases."
Ana Iltis, Director of the Wake Forest University Center for Bioethics,
Health and
Society said, "One of the criteria has to be that you are able to follow
through.
So the claim that a mental condition should never play a role has to be
qualified
realizing it might effect a person's ability. In this case, since you're
talking
about a young child, the parents would be the caregiver, and so there is no
reason
to think that it would effect their ability to follow through with
post-transplant
care."
CBS News