Florida Foster Child Denied Liver Transplant

[Texana]

This is a terrible thought.

At the same time, with limited numbers of organ donations, I can see where the rationale for the decision came.

This child was dealt a bad hand from the beginning.

 

[SeekingJana]

That is so sad. I wish I could take him in for however long he needed.

I was just wishing the exact same thing so hard. Oh, this breaks my heart!! May God intervene and provide a miracle for this boy. I am praying so hard for him to get a liver.

xxooo,
Maria

 

[SeekingJana]

Well, I've had my own reasons to look into liver disease, as most of you know. Sigh. In my reading, I came upon how liver transplant recipients are selected.

There is a medical score called the MELD score. It assesses liver function, general medical condition other than liver, and expected quality of life after transplantation.

IMO, if this boy meets the MELD score for transplant, which is NOT a subjective thing, but a medical scorecard according to lab values and other tests, then by gosh, he should get a new liver!! Let Medicaid pay for around the clock private duty paraprofessionals to take care of him medically. I KNOW Medicaid has such a program because I used to be the director of one. All of our clients were Medicaid recipients under the age of 20, and all had 24 hour a day CNA or LPNs with them, and were visited and assessed regularly by an RN.

Why wouldn't this work for him? They aren't trying very hard, IMO.

Maria

 

[Cubby]

If the child was arrested for something he would get all the care he needs.

Good point!

 

[txsvicki]

If the child is getting SSI for his behavior problems then he should still get his check and his Medicaid after age 18, especially if he's still disabled due to liver problems. Also, I believe there was a law passed that any child age 18 coming out of foster care is immediately eligible for low rent housing. There's no reason to let this child die. I like Larry Hagman, but he was an alcoholic and got his transplant at an older age. Why should a child whose health problems are in no way his fault be sentenced to death. Maybe he wants to live and would what he could for his longterm care. If not, assign him a MHMR caseworker and visiting nurses for awhile! It's just despicable, IMO.

 

[Kiki]

Would anyone be interested in sending the hospital a letter. They may be afraid of a public backlash if they find people are angry. I though about it but I don't think they would listen to me - I'm don't live in the US.

 

[Kiki]

Would anyone send the hospital a letter? I thought if they got a few letters they may realise they'll get a public backlash if they deny this boy just because he's a foster child. I thought of sending them a letter myself but they would most likely ignore me because I don't live in the US.

 

[Kiki]

I thought about emailing this group but is Miami south west Florida? I'm sorry I don't know Florida's geography. What do you think? http://www.childnetswfl.org/services.php

 

[southcitymom]

Well, I've had my own reasons to look into liver disease, as most of you know. Sigh. In my reading, I came upon how liver transplant recipients are selected.

There is a medical score called the MELD score. It assesses liver function, general medical condition other than liver, and expected quality of life after transplantation.

IMO, if this boy meets the MELD score for transplant, which is NOT a subjective thing, but a medical scorecard according to lab values and other tests, then by gosh, he should get a new liver!! Let Medicaid pay for around the clock private duty paraprofessionals to take care of him medically. I KNOW Medicaid has such a program because I used to be the director of one. All of our clients were Medicaid recipients under the age of 20, and all had 24 hour a day CNA or LPNs with them, and were visited and assessed regularly by an RN.

Why wouldn't this work for him? They aren't trying very hard, IMO.

Maria

I don't know how Medicaid works with this.

The MELD score is key for all liver transplant recipients but there is so much more. My friend that just got a new liver Saturday was denied at first because he didn't live within 4 hours of the hospital where the transplant was to occur. When he made arrangments to live with a friend who lived near the hospital, he was then denied because his wife (his primary caretaker) could not live and stay with him while he waited for the potential liver (although she could be with him constantly for months after he got it). Then he had to go through a huge long process to get his friend he was living with to be named his caretaker so that he could get on the list. There were many many more hoops he had to jump through and he almost died while trying to jump through them.

My cousin's wife who has no insurance or money and needs a liver went through all manner of craziness to get a very limited "charity" procedure for people in need of a new liver. She had to even borrow $50,000.00 from a friend for the after-procedure drugs that are necessary. She is still not a candidate - more hoops to jump through and a lower (but still dreadful) MELD score. She is in and out of the hospital constantly. I feel fairly certain she will die before getting the liver she needs.

All of this is just to say that I do think they try to be very very fair. I really do. But it is very hard even for people with resources to get everything in line to make a liver transplant a success.

Again - I don't know the qualifications or hoops that have to be jumped through for Medicaid to help, but I bet there are also lots of factors that have to be considered.

Not everyone who needs and deserves one gets one. My continued prayers for this child.

 

[RainbowsAndGumdrops]

It is cases like this that make me think that I really should sign up to be an organ donor. I just have enough mixed emotions about it that I am hesitant. Think how many more people would be able to get better if all of us became organ donors... I have a hard time blaiming anyone for having to pick and choose who to give organs to when I haven't donated mine.

 

[Jeana (DP)]

It is cases like this that make me think that I really should sign up to be an organ donor. I just have enough mixed emotions about it that I am hesitant. Think how many more people would be able to get better if all of us became organ donors... I have a hard time blaiming anyone for having to pick and choose who to give organs to when I haven't donated mine.

Why are you hesitant about becoming a donor? I may be wrong, but I don't think the actual donor decides who gets their's. After all, we'll be gone when they dole them out. I'm on the donor list as is my husband and my oldest son.

 

[panglossian]

My husband had a liver transplant recently. The original hospital Meld scored him quite differently than the hospital where he was transplanted. You wouldn't think it possible with how regulated it is, but there you are. Some hospitals transplant at a very low Meld score and there is currently a shake up in the Meld system in regards to that practice, so needier higher score patients can receive transplants. Some transplant at too high a score giving little chance for survival.

The hospital Hepatologist and the Liver Surgeons(who are more important, IMO) have a lot of say in the selection. My Husband went before a selection panel after being interviewed extensively, evaluated/tested to determine if he could survive the surgical procedure and Meld scored.

We had to prove that we could bear it financially, that his support system was strong (me), caregivers available 24/7(me), home life stable (me). So, yes, I was interviewed and evaluated for his transplant. If one of those factors had not been met, he would not have been considered a candidate for transplant.

In the months following his transplant we have had to deal with rejection, infection and more hospitalizations. The medications have run well into the thousands for us because only anti rejection meds are covered with the operation and insurance falls short.

My husband tries but is not efficient at remembering to take all of his meds 4 times per day or more if something is added. I must be on top of that plus evaluate him for rejection, infections or virus on a daily basis.
Post transplant care is as important as the surgery. I do understand the need for long term commitment by a second party because it is vital for the survival of the patient.

 

[RainbowsAndGumdrops]

Why are you hesitant about becoming a donor? I may be wrong, but I don't think the actual donor decides who gets their's. After all, we'll be gone when they dole them out. I'm on the donor list as is my husband and my oldest son.

My hubby is hesitant because he thinks that if he is close to death the doctors may say..."hmmmm, look at these nice healthy organs" and choose the organs over trying to keep him alive.

For me, I think my parents would have an issue with it. My parents feel you should keep the body intact for burial. If I die before my parents, I am not sure i want to make the situation worse by making my final act to give up my organs if they view that negatively.

 

[Jeana (DP)]

My hubby is hesitant because he thinks that if he is close to death the doctors may say..."hmmmm, look at these nice healthy organs" and choose the organs over trying to keep him alive.

For me, I think my parents would have an issue with it. My parents feel you should keep the body intact for burial. If I die before my parents, I am not sure i want to make the situation worse by making my final act to give up my organs if they view that negatively.

Please tell your husband that doctors really don't think that way. They'll take saving the lives of their patients any day!!

I understand wanting to please your parents. Hopefully, they won't have to bury you because I can't imagine anything worse for them. :blowkiss:

 

[hipmamajen]

It is cases like this that make me think that I really should sign up to be an organ donor. I just have enough mixed emotions about it that I am hesitant. Think how many more people would be able to get better if all of us became organ donors... I have a hard time blaiming anyone for having to pick and choose who to give organs to when I haven't donated mine.

I'm glad you're thinking about it.

I was reading this thread thinking that if more of us were donors, there would be more organs to go around and everyone in the system would have a greater chance of a successful transplant. Obviously not everyone would be eligible, regardless of the number of organs available, but it would sure cut down on the people who are dying while waiting for their chance.

There are some interesting statistics here.

These two really hit me:

Every day, 17 people die while waiting for a transplant of a vital organ, such as a heart, liver, kidney, pancreas, lung or bone marrow.

~and~

Because of the lack of available donors in this country, 3,916 kidney patients, 1,570 liver patients, 356 heart patients and 245 lung patients died in 2006 while waiting for life-saving organ transplants.

I'm not saying that everyone should donate or else! A lot of people have strong personal, philosophical or religious objections against organ donation. But, I'm willing to bet a lot of folks aren't donors because they just never thought about it, or they just aren't aware of how desperately the organs are needed. So, whenever I get a chance, I get the word out.

 

[Grainne Dhu]

Please, everyone, please, please, please arrange to donate your organs after death. If you can face it, sign up for registries for bone marrow as well (can be and often is taken from living donors).

I have three MDs in my immediate family, including one transplant specialist. Believe me, my family member who is a transplant specialist would far rather save a living person with their organs intact and he fights like a tiger for every single one of his patients. He would never EVER consider letting a living patient go in order to get their organs for transplant. Each and every one of his patients is precious to him and he will go far above and beyond the call of duty for every single one.

It isn't just major organs that are needed. Sometimes families that aren't willing to donate major organs are willing to donate corneas--so that someone else can see the beauty of this earth even though their own loved one will no longer be able to. Skin can be harvested to help save a burn victim's life and cut down on the number of debridements they will have to go through. Bone marrow can offer life to a number of different people. Bone can help someone walk again or reconstruct a face (a growing problem with the war in Iraq is the number of severely disfigured veterans who need bone for reconstructive procedures).

Organ donation is truly the gift of life for another human being. Please don't take anything with you that you won't be needing any longer! I do not follow any of the Abrahamic religions but as I understand it, Y-hw-h, God and Allah are thought to love their followers. If this is so, I cannot believe that any of them would disapprove of any of their followers making one last gift to help out fellow human beings.

 

[Jeana (DP)]

Grannie, I'm signed up to give everything and anything they can use and they'll cremate whatever is left of me.

Excellent post!!! I hope you've convinced some others to donate!

 

[6angels]

IS this child up for adoption? Does anyone know? My husband and I would step up and adopt him and provide him with a wonderful forever home. This way he would have a great home and could get his transplant. we are looking to adopt anyways! So perfect for both.

 

[ttrachel04]

if i wasn't 21 years old an unemployed and recovering from injuries ...

I'D ADOPT HIM !!!!!!!!!!!

poor kid. breaks my heart.

 

[txsvicki]

This case doesn't necessarily seem to be about the lack of organs available, but the costs that the state will have to put out for the boy's care since they don't feel that he will have anyone to take care of him afterwards.