January 18th, 2012
By
Hannah Roberts
Last updated at 1:45 PM on 18th January 2012
A family has acccused a hospital of denying their child a vital kidney transplant because she is disabled.
Amelia Rivera, three, has Wolf-Hirschhorn syndrome, a genetic disorder that causes mental and physical developmental delays. Many sufferers do not live beyond the age of two.
But her mother Chrissy Rivera says that when she went to their local hospital in Philadelphia last week to discuss the transplant, doctors told her they will not recommend a transplant for the little girl known as Mia.
All smiles: Amelia ‘Mia’ Rivera has
Wolf-Hirschhorn syndrome, a genetic disorder that causes mental and physical developmental delays
Mrs Rivera told ABC News she initially ‘thought we were just finding out how a transplant works and how we could be a donor.’
‘But then, I was told we couldn’t
because she was mentally retarded,’ she said. ‘Those were the exact
words on a piece of paper.’
Medical staff also expressed concerns
about Mia’s ability to cope with taking medication for the rest of her
life, and especially when her family were no longer around to look after
her, Mrs Rivera claims.
If true, Mia’s treatment would be
reminiscent of attitudes in the 1960s, when Downs syndrome children with
physical problems were frequently allowed to die.
‘Everyone should be treated equally,’ Mrs Rivera told ABC News. ‘This is outrageous.’
Mia who has two brothers, aged 11 and 6 cannot walk or talk and has a gastrointestinal tube because she cannot eat by herself.
The child’s family say the 3-year-old will die if she does not get a kidney within the next 12 months
Chrissy with her husband Joe (right). She believes doctors’ preconceptions about Wolf-Hirschhorn syndrome are ‘pretty dated’
‘But she smiles and plays and recognizes us and loves her brothers,’ said Mrs Rivera. ‘They love to play with her.’
She also believes doctors’ preconceptions about Wolf-Hirschhorn syndrome are ‘pretty dated’.
‘There are people in their 60s and plenty of them in young adulthood in their 20s, 30s and 40s,’ she said.
‘Any mother wants the best for her child and will do whatever it takes to get it,’ said Mrs Rivera,
‘Mia isn’t to blame for this. She didn’t want ask for this syndrome and all we ask for is the right to fair medical treatment.’
The Children’s Hospital of Philadelphia said it ‘does not disqualify potential transplant candidates on the basis of intellectual abilities’
The Children’s Hospital of
Philadelphia said it ‘does not disqualify potential transplant
candidates on the basis of intellectual abilities,’ but refused to
comment on the specific case.
‘We feel and understand your frustration, but we are unable to comment publicly on individual cases,’ it added.
The distraught mother wrote a blog piece about her daughter’s tragic situation last week.
And after reading it, Sunday
Stilwell, a Maryland mother with two autistic boys, launched a petition
campaign through the website Change.org.
‘We had never met,’ Mrs Stilwell told ABC News.com. ‘I read about what Chrissy went through and was inspired.’
More than 20,000 online supporters
have now come forward to demand the hospital give the toddler the kidney
they say she needs to survive.
Responding to anger about Mia’s plight on the hospital’s Facebook page medical staff wrote: ‘We hear you.’
Share this article:
Here’s what other readers have said. Why not add your thoughts,
or debate this issue live on our message boards.
The comments below have not been moderated.
-
Newest -
Oldest -
Best rated -
Worst rated
Kidneys are in short supply and the rehabilitation following surgery is very hard. This young girls general health is poor as is her life expectancy. Sadly I think the doctors were right.
Report abuse
Or is that the American attitude-no money,no health care? Mac UK
Yes this is the American attitude.
No health care, no treatment.
You should be thankful if you can walk into a hospital and expect to be treated regardless of your financial situation.
I recently had a friend go to the hospital with no insurance and they made her turn her pockets inside out and give them all her change.
Yes, really, I was there and saw it.
Report abuse
Did it mention who was going to pay for this surgery. - Dean Smith, Palm Springs, California, USA, 18/1/2012 6:06 Does it matter? Or is that the American attitude-no money,no health care?
- Mac, UK, 18/1/2012
Yes it is…didn’t you know?
Report abuse
I am sorry to say that this is reality. Poor doctors have to make these unpalatable decisions all the time, it is the toughest part of their work as they have spent there whole adult life training and wanting to save people’s lives. I am sure that they are also taking into consideration what this child’s quality of life would be as it is an extremely painful procedure that will a long recovery time and as she has so little time with her condition surely let it be as pain free as possible.
Report abuse
“If there were enough kidneys for anyone who needed one, she’d get one. But there are far from enough so she does NOT get one. If I needed a kidney, I, too, would be denied because of my age. Life is tough.
- SantaFeJack, Santa Fe New Mexico USA,” — They explicitly said it was because of her mental condition that the operation was refused, not the availability of a kidney - which her own parents have offered. Ageism is a seperate problem. For those of us who have contributed all our lives to our society, it can be upsetting when you realise that you’re of no value any more and will be simply discarded.
Report abuse
Another example of the medical establishment playing God. Allow her to stand in line for a transplant and stop dictating who is mental worthy and who is not.
Report abuse
Another example of the medical establishment playing God. We know people are waiting in line for transplants, yada, yada…put her in line based on need, not what the medical Gods dictate her mental appreciation will be.
Report abuse
If there were enough kidneys for anyone who needed one, she’d get one. But there are far from enough so she does NOT get one. If I needed a kidney, I, too, would be denied because of my age. Life is tough.
Report abuse
…what has happened to ones “human rights”? I sincerely hope they are not insiniuating this beautiful little girl isn’t human! She is more human than alot of “people” living in England as a safe under the protection of “human rights” after the most horrendous attrocities they have committed elsewhere… In my views she has 100% human rights to be eligible for a kidney transplant. It would be different if the decision was based on medical grounds that would ultimately not be beneficial to her.
Report abuse
I doubt this has anything to do with discrimination about that fact that she is disabled child and everything to do with the fact that she is unlikely to A. survive the op, and B. be able to successfully break down the immune blockers required after the op, so her body will not reject the organ. If this was all about doctors not wanting to give a disabled child a chance, then why would they operated on down syndrome babies, to correct heart defects, or spina bifida babies to correct spines? My heart goes out to this couple, I can’t imagine the anguish they must be going through, but going to the press with sensationalist stories will not help ease their pain.
Report abuse
The views expressed in the contents above are those of our users and do not necessarily reflect the views of MailOnline.
Recent News
- India, China finalise working mechanism on borders
- Watson and wife adopt Inuit baby
- Doctors deny sick toddler a kidney transplant- just because she is mentally disabled
- 499 Cuban health professionals coming
- Jessica Alba’s Diet Secrets: How She Dropped the Baby Weight
- Key Reform Ally Dishes On ‘Weak-Kneed’ White House Health Care Push
- Health care ideology under the knife
- Taught by nuns and working like ants - Barcelona coach Pep Guardiola and his first footsteps to greatness in sleepy Santpedor
- Doctors raise doubts over safety of flu drug Tamiflu
- Doctors should wait 30 weeks to reveal baby’s gender to curb sex-based abortions: journal