Announcement

Collapse
No announcement yet.

Disabled baby denied heart transplant

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

  • Disabled baby denied heart transplant

    The mood in the room was somber as five doctors, a nurse, and a social worker pulled their chairs around the table and turned to address Autumn Chenkus and Charlie Higgs.

    The couple's 5-month-old son, Maverick, was down the hallway fighting for his life, and the doctors explained there was nothing they could do to help him.

    "Take your baby home and love him for the time he has left," Chenkus and Higgs say the doctors told them.

    They asked how long their son had left to live. About six months, they remember the doctors telling them.

    Higgs wept, but Chenkus felt like she'd cried enough in the past five months for a lifetime. She was like a rock now, and after the meeting with the doctors she went directly back to her son's room without shedding a tear. In a chair next to his hospital crib, she opened her laptop and hoped the Internet might have clues for how to keep her baby alive.

    Maverick was born with a severe heart defect, and even after two surgeries was in heart failure. Doctors had discussed a heart transplant with Maverick's parents, but at the meeting they said he didn't qualify for a new heart because he had a rare genetic defect that put him at a high risk for tumors and infections. A heart transplant would be too risky, they explained.

    As Chenkus did her research on Maverick's genetic condition, she couldn't believe her eyes. Not one of the studies she read mentioned anything about an increased risk for tumors or infections. She e-mailed one study's author, and he confirmed she was right.

    Now they'll do the transplant for sure, she told Maverick's father excitedly. Our son doesn't have to go home and die.

    But it didn't matter. The doctors still refused to give Maverick a new heart.

    At first, Maverick's mother was confused, but then she said it dawned on her: This supposed propensity for infections and tumors was a smokescreen.

    She felt the real reason the doctors were denying their baby a life-saving transplant was that children with Maverick's genetic condition grow up to have disabilities. They don't want to give Maverick a heart because he won't grow up to be "normal," she thought.

    At another meeting, she looked one of the doctors in the eye.

    "You're discriminating," she said.

    "That's ridiculous," she remembers the doctor responding.



    "You don't want to waste a heart on him," Chenkus replied. "You're trying to play God, and you're lying to me."

    What happened next is the subject of a federal investigation and has pitted a family against the very doctors who were supposed to save their baby's life.

    "They're blowing smoke up my butt"

    There are few hard and fast rules to guide doctors as they select who will get a transplant, effectively selecting who will live and who will die.

    And there's no question some will die. Last year in the United States, 321 people, including 19 infants, lost their lives while waiting for a new heart. Right now, some 3,500 people await a heart transplant, and the situation is only getting more desperate as the waiting list grows but the number of donors remains about the same.

    In the face of such scarcity, doctors try to select the patients most likely to get the longest life, and the highest quality of life, from a new heart.

    "We have to be stewards of a very valuable resource. We want hearts to go to people who we think will benefit the most from them," said Dr. David Taylor, immediate past president of the International Society for Heart and Lung Transplantation.

    These decisions are, to some extent, subjective, as doctors sometimes disagree with each other about who should get an organ. Over the years, medical ethicists and patient advocates have accused transplant physicians of discriminating against one group in particular: the disabled.

    "We absolutely know this happens. It's a huge problem," said David Magnus, director of the Center for Biomedical Ethics at Stanford University. "It's real people sitting in a room making these tough decisions, and it's not surprising their own prejudices and biases influence them."

    He points to the case of Amelia Rivera, a New Jersey girl with disabilities who was denied a kidney transplant last year, and to a survey he conducted in 2008 showing that more than four out of 10 pediatric transplant centers say they always or usually consider a child's neurodevelopmental delays when making a transplant decision, even though studies have found children with these delays fare just as well medically after a transplant as other children.

    In the past when transplant doctors rejected patients with disabilities, they were often explicit about why.

    "We do not feel that patients with Down syndrome are appropriate candidates for heart-lung transplantations," doctors wrote in 1995 to a patient named Sandra Jensen, according to a newspaper article at the time. An uproar ensued and Jensen got a new heart.

    Now families and advocates say to avoid adverse public reaction, doctors are shrouding their transplant denials in medical excuses that some say are outright lies in order to avoid transplanting patients who will never be "normal."

    Karen Corby said doctors have given her one reason after another for refusing to give a transplant to her son, Paul, 24, who has autism, and she doesn't believe any of them.

    Corby, who reached out to three hospitals for a heart transplant for her son, said doctors have told her Paul wouldn't be able to manage the complicated drug regimen after his transplant. Corby, 47, explained that she lives with her son and directs his care, and if anything were to happen to her, he has "Team Paul," his sister and six aunts and uncles.

    She was also told transplant medications could have potentially harmful interactions with Paul's psychiatric medications. She responded that Paul's psychiatrist said he could easily switch to other drugs.

    Doctors also said they worried Paul might not be able to let anyone know if he felt sick after the transplant. Karen replied that her son, who graduated from high school and has taught himself to program computers in several languages, is completely verbal and had alerted her a few years earlier to subtle symptoms that ended up being a stroke.

    "To be blunt, I feel like they're blowing smoke up my butt," she said.

    Ari Ne'eman, president of the Autistic Self Advocacy Network, agreed that doctors sometimes "blow smoke" at patients with disabilities.

    "Doctors give faux medical reasons. On further scrutiny, they don't stand up," said Ne'eman, who wrote a policy brief on the issue. "When someone with a disability is looking for a transplant, discrimination is the norm."

    Transplant doctors said they don't discriminate against people with disabilities, but that disabilities need to be considered when making transplant decisions.

    For example, Taylor, a heart transplant cardiologist at the Cleveland Clinic, said physicians must weigh whether a patient -- any patient -- is willing and able to follow complicated post-transplant medication directions. If the patient doesn't follow doctors' orders, the body could reject the new organ.

    "If I were to go in front of the transplant committee, they'd want to stop and see if I'm some pompous doctor who's not going to listen to instructions," he said. "That has to be taken into account."


    May we raise children who love the unloved things - the dandelion, the worm, the spiderlings.
    Children who sense the rose needs the thorn and run into rainswept days the same way they turn towards the sun...
    And when they're grown and someone has to speak for those who have no voice,
    may they draw upon that wilder bond, those days of tending tender things and be the one.

  • #2
    It's definitely very sad, but it's also very true: until there are enough hearts/lungs/kidneys/livers/whatever to go around, there has to be some sort of criteria to decide who gets one and who doesn't. It's a terrible choice to have to make, but someone, somewhere has to make that choice so long as there are not enough organs to go around.

    My guess is that there are very few valid infant organs around. Not only do infants just not die all that often (relative to the rest of the population), but I would suppose that it would be exceptionally difficult to convince the parent(s) of a dead/dying infant to go through the donation procedure. Plus, I would hazard a guess that relatively many of the infants who die are succumbing to some sort of disease that makes their organs not viable for transplantation. Let's not forget where organs come from: usually some horrible motorcycle crash or something of that sort. Babies don't usually drive cars or otherwise have the opportunity to suffer a fatal accident of some sort. Not saying that it doesn't happen, because clearly it does, but just in the numbers of the population, it's relatively rare.


    I feel for this couple. I really do. But no matter how much we may emotionally not like it, the harsh reality is that if this baby gets a heart, it's ultimately denying a heart to some other baby, and if that other baby has a greater chance of growing into a long-living, productive, successful adult, then the wrong choice would have been made. That's heart-breaking (no pun intended), but that is ethically the right choice to make.
    Bask in the warmth of the Deep South
    No one will be denied:
    Big law suits and bathroom toots;
    We're all getting Dixie-fried.
    But somewhere Hank and Lefty
    Are rollin' in their graves
    While kudzu vines grow over signs that read "Jesus Saves."

    Comment


    • #3
      Originally posted by Adam View Post
      It's definitely very sad, but it's also very true: until there are enough hearts/lungs/kidneys/livers/whatever to go around, there has to be some sort of criteria to decide who gets one and who doesn't. It's a terrible choice to have to make, but someone, somewhere has to make that choice so long as there are not enough organs to go around.
      And there is no better way to decide who lives and who dies than by eugenics/social darwinism. After all, those who have disabilities won't contribute was much to society and therefore aren't important.

      Adam, you really don't realize how bad you sound on this subject, do you? It's eugenics, pure and simple.

      Comment


      • #4
        Originally posted by Lanie View Post
        And there is no better way to decide who lives and who dies than by eugenics/social darwinism. After all, those who have disabilities won't contribute was much to society and therefore aren't important.

        Adam, you really don't realize how bad you sound on this subject, do you? It's eugenics, pure and simple.
        I said repeatedly that it's a very sad situation.

        It doesn't matter how I sound on the subject, these are the facts. They have been the facts ever since we started transplanting organs in human beings. These will continue to be the facts until such time as organ transplants either become unnecessary, we can custom-make artificial organs as needed, or there somehow becomes an adequate supply of organs such that everyone who needs one can get one.
        Bask in the warmth of the Deep South
        No one will be denied:
        Big law suits and bathroom toots;
        We're all getting Dixie-fried.
        But somewhere Hank and Lefty
        Are rollin' in their graves
        While kudzu vines grow over signs that read "Jesus Saves."

        Comment


        • #5
          Taking survivability into account is not eugenics or social darwinism.
          Enjoy.

          Comment


          • #6
            The examples given didn't have any survivability issues. The point was that the procedure would be successful but that the gatekeepers didn't think weird or retarded kids should get the shot.
            "Alexa, slaughter the fatted calf."

            Comment


            • #7
              Doctors had discussed a heart transplant with Maverick's parents, but at the meeting they said he didn't qualify for a new heart because he had a rare genetic defect that put him at a high risk for tumors and infections. A heart transplant would be too risky, they explained.
              That sounds suspiciously like a survivability issue.
              Enjoy.

              Comment


              • #8
                Originally posted by Lanie View Post
                And there is no better way to decide who lives and who dies than by eugenics/social darwinism. After all, those who have disabilities won't contribute was much to society and therefore aren't important.

                Adam, you really don't realize how bad you sound on this subject, do you? It's eugenics, pure and simple.
                There is no way we know all the relevant facts in this situation. If, for example, the doctors had to choose between a kid with alpha thalassemia trait (who will not only be "disabled," but will live a maximum of 2 years) and a kid who will grow up and live a relatively normal lifespan, sorry, it's no contest. And I say this as someone who has lost a loved one to one of these hard decisions.

                What if it were at the other end of the spectrum. What if your pre-schooler needed a new heart and was a match for the same donor as a 75-year-old person who also needed a heart? Who do you think should get it?
                "Think as I think," said a man,
                "Or you are abominably wicked;
                You are a toad."
                And after I had thought of it,
                I said: "I will, then, be a toad." - Stephen Crane

                Comment


                • #9
                  Originally posted by Norm dePlume View Post
                  That sounds suspiciously like a survivability issue.
                  You might want to read beyond that point, friend.
                  "Alexa, slaughter the fatted calf."

                  Comment


                  • #10
                    Originally posted by Gingersnap View Post
                    You might want to read beyond that point, friend.
                    Why, because the mother doesn't see it that way? I have my doubts about her objectivity.
                    Enjoy.

                    Comment


                    • #11
                      Originally posted by Norm dePlume View Post
                      Why, because the mother doesn't see it that way? I have my doubts about her objectivity.
                      While I doubt her objectivity, if she is correct, then there is something suspicious here. I agree with survivability. I disagree that autism ought to be a disqualifier if in fact it is.
                      Not where I breathe, but where I love, I live...
                      Robert Southwell, S.J.

                      Comment


                      • #12
                        The researcher she contacted who about wrote the condition her has denied the doctor's view of the condition. At the very least, the panel denying the child ought to get their information from the people most likely to study the condition.

                        Now, if they still the deny the kid based on their ideas that his life won't be worth living because he'll be slow or non-verbal or have funny hair, that's fine but they need to explicitly state that and not hide behind a medical-sounding opinion that is really an subjective opinion about quality of life, parental interest, and long-term resource availability.
                        "Alexa, slaughter the fatted calf."

                        Comment


                        • #13
                          This article has an update, which includes some good news:

                          On May 18, Maverick was taken to Boston, where doctors tinkered with his medications for three weeks. That was when he started to respond quickly. His blood pressured dropped by more than 30 points and his oxygen levels increased by a lot.
                          Maverick became more lively in Boston, and within one month he gained one pound. When he was in the hospital in New York he gained no weight, even after three months.
                          Eventually the doctors in Boston told Chenkus and Higgs that that Maverick actually did not need a transplant because he was doing so well. They said also that he was going to be able to head home within a few weeks.
                          The doctors did say that in the future Maverick may need to have a heart transplant, but if he did, then it should be no problem.
                          So, I applaud the mother for sticking to her guns.

                          The infection risk is not made up, though.
                          Coffin-Siris syndrome was first described in 1970 by Dr. Grange S. Coffin and Dr. Evelyn Siris. It may also be known as fifth digit syndrome. The cause of the disorder is unknown, and the combination of symptoms may vary by individual. All affected children have some form of mental retardation or developmental delay, and incompletely formed (hypoplastic) or absent fifth fingernails and tips of the fifth fingers (distal phalanges). There are some reports of fingers other than the fifth being affected, and affected toes and toenails. The face of a child with Coffin-Siris syndrome is usually described as coarse. This includes a flat nasal bridge, broad nose, wide mouth, thick lips, and in some cases, thick eyebrows, long eyelashes, palate malformations, a large tongue (macroglossia), and a small head (microcephaly). While some infants have an abnormal facial appearance, most of the facial features become more prominent as the child grows. Typically, there is sparse scalp hair in the infant and excessive growth of body hair (hirsutism). Reduced muscle tone (hypotonia), lax joints, delay in bone maturation, and short stature are commonly found. There are reports of frequent upper respiratory and ear infections. Occasionally, children with this disorder have cardiac or spinal abnormalities, hernias, vision or hearing problems, or delayed tooth development (dentition).
                          Enjoy.

                          Comment


                          • #14
                            Originally posted by Norm dePlume View Post
                            This article has an update, which includes some good news:


                            So, I applaud the mother for sticking to her guns.

                            The infection risk is not made up, though.
                            I would hope the transplant doctors are looking at info a bit more detailed than a health line encyclopedic entry to determine risk so high that it puts someone out of the running for a heart.

                            Glad to hear the boy is doing well, though. Just another reminder to make certain I renew my organ donor status. I wish more people would. I've never been able to fathom not donating.
                            Last edited by phillygirl; Monday, December 2, 2013, 7:44 PM.
                            Not where I breathe, but where I love, I live...
                            Robert Southwell, S.J.

                            Comment


                            • #15
                              Originally posted by phillygirl View Post
                              I would ope the transplant doctors are looking at info a bit more detailed than a health line encyclopedic entry to determine risk so high that it puts someone out of the running for a heart.
                              Did I somehow give the impression that I thought my source was the one the doctors were relying on? If so, that was erroneous. I don't think that at all, but I don't have a JAMA subscription.
                              Enjoy.

                              Comment

                              Working...
                              X