Wednesday, July 9, 2008

Foster child denied shot at new liver

A Central Florida foster child needs a life-saving liver, but doctors have taken him off a transplant list because they fear he cannot recover from surgery without a stable home.


A disabled foster child whose liver is failing has been removed from a Central Florida hospital's organ-transplant waiting list because hospital administrators fear the state's shaky child-welfare system cannot ensure he has a permanent home in which to recover.

Shands Hospital in Gainesville removed the boy, 15, from a waiting list for organ recipients after administrators determined the boy's unstable living conditions make him a poor candidate for a transplant, said Nick Cox, the Department of Children & Families regional administrator in the Tampa Bay area, where the boy lives.

The state's next move: appeal to Miami's Jackson Memorial Hospital, which DCF officials hope will put the teen on its transplant wait list.

Shands administrators told DCF chiefs they had serious concerns that the boy might not be in a safe, permanent home for the two years necessary to ensure his body does not reject the new liver, Cox said. The hospital, he said, ``had a big concern about post-placement permanency.''

The teen, who is not being named by The Miami Herald to protect his privacy, is in the advanced stages of liver disease, and doctors say he will need a new liver.

Child welfare bosses contacted doctors at JMH in an effort to place the teen on a wait list there, and the boy cleared his first hurdle when JMH doctors reviewed his medical records and agreed he is in need of a new liver, Cox said.

''Jackson has given me hope,'' Cox said late Monday. ''We think Jackson could be the angel for this child. We are holding our breath that they will be able to clear him'' for the surgery.

Kim Jamerson, a spokeswoman for Shands, declined to discuss the boy's case, saying the hospital did not have enough time late Monday to reach doctors who were involved with his care.

A spokeswoman for JMH said she was unable to get information on the case Monday night.

Although all hospitals that perform transplants have to abide by the same national standards and protocols on choosing recipients, doctors and hospitals can disagree about how to interpret the criteria in particular cases, experts on transplants say.

The boy has had a difficult life, even for a foster child.

Removed from his mother at infancy because she could not kick a crack cocaine habit, the teen had been living with relatives under DCF supervision until about a year ago, when his relatives were unable to continue caring for him. Since then, he has been in foster care in the Tampa Bay area.

BEHAVIOR ISSUES

He has been diagnosed with a developmental disability and often has difficulty controlling his behavior. DCF tried to arrange for him to live in a medical foster home in Gainesville so he could be near the hospital during the lengthy recovery process, but child-welfare workers were unable to find a specially trained home that would accept him.

DCF caseworkers are also trying to get the boy services from the state Agency for Persons with Disabilities, Cox said, but APD rejected his application because the agency has a waiting list with more than 15,000 Floridians seeking care.

''This child has spent his entire life in a struggle,'' Cox said. ``And the system doesn't always help him. This is one of his ultimate struggles.''

Cox said the state expects to hear from JMH shortly. If the hospital agrees to put him on the transplant wait list, DCF will have to fly him to Miami, where he will stay at the Ronald McDonald House near the hospital for a battery of medical tests over two or three days.

Jackson also must ensure the boy is able to pay for the costly procedure, said Cox, who added that finances should not be an impediment since the boy, as a foster child, is insured through the state's Medicaid program.

If JMH approves the teen, he could go on Jackson's liver transplant list quickly. ''We are hoping and praying they will do that,'' Cox said.

Kenneth Goodman, who heads the University of Miami's bioethics program, said the state should be able to ensure that the child is in a stable enough environment to receive care after the transplant. ''When it comes to children, there are ways to ensure adequate post-operative treatment,'' he said. ``In the case of children with special needs, it requires a special effort. Can we find anyone who will say in public that children with disabilities are not worth that effort?''

Arthur Caplan, chairman of the medical ethics department at the University of Pennsylvania's medical school, said he could think of few, if any, reasons to deny a disabled foster child a transplant organ -- such as if a child's disability rendered him suicidal, or completely incapable of accepting care.

`BAR TOO HIGH'

Caplan said it is unreasonable to require the state to guarantee the boy will be in a permanent home for at least two years, given that even children who are not in foster care can't make such guarantees. ''That is a bar a little too high,'' Caplan said.

Transplant teams routinely accept pledges from recovering alcoholics that they will never drink again after accepting a donated liver, or promises that smokers will quit smoking once they receive a new heart, Caplan said. Why should a foster child be required to do more than that? he asked.

''It is absolutely unethical to deny a transplant to a child because you don't have a home setting that is stable or parents who can help with compliance with the treatment,'' Caplan said.


``That's why you have child-caring agencies and foster care. That's what child welfare should be doing.''

Link with comments -

Foster child denied shot at new liver - 07/08/2008 - MiamiHerald.com

This story made me sick.. how dare they allow this to happen in America..
HOW DARE THEY!

1 comment:

Anonymous said...

I am also a mother been going through similar experience as yours , getting up in the morning facing a day wondering,how my 11 year old child has got through 3 years treatment for leukaemia and is living with the chaos and abuse of his human rights to enjoy contact with his family.

I have not seen my son for 2 years now. I saw him briefly last Tuesday week as he drove past in a van when he should have been in school.
My son waved at me in delight at seeing me and I also waved back,even blew him a kiss.
Those actions are enough to be in contempt of court ,which could lead me to prison like other parents that have gone before me.
I have heard of Mark Harris also Sarah White who also blew kiss and said I love you in chance passing when they saw their beloved children on the streets in England.
I lost my case in 2004 in the UK secret Courts, I was set up for emotional harm ,doubled with neglect.
I have not been blogging long when a journalist recently found my blog which can be found on my front page of liverpoollou6 on you tube channel blog;http:/lynda65@multiply.com .You can alos find my videos on my YT liverpoolou6 channel / lindamac on YT Children's Prison .
So you will have to agree with me on this when I say that , it amazes me at how the media are so slow to take on board all of this information if someone shut me out I would make it my business to find out what this secret was all about.
Well lets face it they would be,behind on serious matters when for years they have been kept in the dark, just like you I am going to set out the story in peicemeal fashion in easy stages for people to be able to get themselves ,clued up so it does not happen to their family.
If it does then they to will be able to withstand the heartache and learn to deal with the harsh reality of fighting long term also living a fragmented family life, as the majority of families like us globally experience draconian barbaric rule of the courts which we say has in fact destroyed the future for our children.

I simply home in on your page for the MMP1 test as this was used or a similar test from a bogus individual working from a PO box address in my case an out of date version of a 30 year old test not valid was used on myself designed for psycho-pathic- deviants/homosexual. in Minnesto also it was designed for black people. I scored high of course sat through a test answering 5 times each question yes or no. when the inconclusive test was put before the court it was damning in effect lost me my case. A young man would of hung himself on reading the results.I just laughed ,after getting over the shock of a lovely English respectable gentleman with a brief case done that to me for a lot of money.To get away with this he only gives out a PO BOX address.

I could go on but I do not have the time as my feet touch the floor and I am up out of bed and at my key board. The amount of information which is requested from my knowledge of the system is like a new career I have taken to blogging and You Tube like it is second nature.

I have not even had a cup of tea as I write to a mother who has the insight just how evil this world can be and a dangerous place to live in with the state as a corporate parent.

I will come back and read more , but as you know it is a busy life of a blogging mother who is getting stuck in the traffic on the internet discussing secret cases of children being destroyed by Social Services.
I am busy right now with dealing with the media at present .
Then I am also Campaigning to open closed adoption cases for children to find a stem cell donor. I for 1 am not convinced the MP's or the Government or adoption UK will save adopted Children's lives when they are so critically ill.

Please check out www.adonorforgrahambarnell.com

The MP's can spend so much time chewing the fat getting nothing done ,it is obvious to the general public over herein the UK anything worthwhile done in a working day of a politician for these children.
So it is left to myself to go cap in hand for help to run a global data base along side the NHS which is the current system for families to link up with each other for when children/adults need to find a stem cell donor a bone marrow donor .



For some of these children , their families what is left of them are on the run in other countries rather than face trials here.
So here I end my post as I try to help others lost in a system.
A petition is posted for Grahams petition on no 10 Downing street asking the Government to assist adopted children/adults who have been adopted.

You now know the rest as you have been through it all , the cases will never be open ,due to the corruption of cases in closed courts,how can we expect justice for families when the pathology is tampered with as evidence in closed courts by expert witness's.
I admire your courage and your tenacity for telling it as it is.