Charlie Gard

  1. I'm sure most are familiar with the Charlie Gard case. He's a baby with the rare genetic condition mitochondrial DNA depletion syndrome, which affects just 16 children in the world. He can't swallow, see, breathe, or hear on his own. His parents went to court against the hospital to allow for an experimental treatment in the U.S. But doctors in his hospital in Britain have said that the baby has suffered extensive brain damage and will never recover, and that prolonging his life will just cause him more pain and suffering. There's a huge debate all over the news in the U.S. over whether or not the parents should still be allowed to take him over for the treatment, which has no proven results.
    I was wondering what we all as health-care providers or future health care providers think about this situation. I think it's a really hard scenario but that at the end of the day multiple doctors have confirmed that the child is just in pain & that care should be withdrawn. President Trump and the Pope have given their support to the parents. What are your views?
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  2. 23 Comments

  3. by   Sour Lemon
    The parents decided not to treat him. The debate is over (at least for this case).
  4. by   Guy in Babyland
    Unfortunately, this is a first world problem as a result of advanced medical technologies. Not too many years ago this child may have lasted less than a week and there would be no ethical debate . Now we have the technology to prolong the "life" of infants with machines when there is literally a human doll in the bed. Unless the medical issues overwhelm modern medicine's ability to stabilize the patient, the patient's body can be held in limbo by machines indefinitely. There are some babies that have way too many genetic or congenital issues to survive and prolonging the life via machines is just delaying the inevitable.
  5. by   meanmaryjean
    Agree with Guy in Babeland.

    What really frosts my cookies is the AP continually referring to this child as "critically ill". He is not critically ill, he has a fatal genetic condition and is on life-prolonging measures while the courts/ parents/ media/ healthcare system hash things out.

    I don't mean this to sound cruel- but the only way I know to express it is this: Some people just cannot accept 'no' as an answer. No- children with fatal genetic conditions are not able to be cured. No- we aren't at that point yet in our knowledge or treatment development. No- as much as everyone wants it to be different, this child cannot survive.

    It is sad, devastating, horrible and gut-wrenching to be sure. But the kindest thing that could be done for this child is to let his parents hold him, pull that tube out of his nose, and let him go in peace.
  6. by   KelRN215
    The doctor in the US who originally offered him the experimental treatment reversed his offer when he saw the baby's latest MRI. There is nothing to be done for this baby. He has a fatal condition. I did wonder if they don't send kids home trached and vented in the UK like we do here in the US when I read about him. But I think there are ethical concerns with doing that too.
    Last edit by traumaRUs on Jul 27
  7. by   Emergent
    This case is just an extreme example of our hope that medicine will save us from life's imperfections and from our own mortality. And even in the obviousness of the futility of it, the religious people are wringing their hands and having a gnashing of teeth over it.

    True spirituality, in my opinion, is finding inner peace in the face of adversity. I don't think it is clinging to life, through technology, at taxpayer expense, while children are wanting for a bowl of rice and other parts of the world.
  8. by   traumaRUs
    Moved to Nursing News with the caveat to please keep politics out of the discussion - several posts have been removed/edited....thanks
  9. by   llg
    As an old NICU nurse who has cared for many babies born without the necessary requirements to sustain extra-uterine life ... I agree with the themes expressed by the previous posters. Some people (such as these parents) simply expect too much. Sadly, we can't fix everything -- and there are simply some genetic deficiencies, birth defects, etc. that are incompatible with life. We can keep the kids' bodies going for a while, but all we are doing is prolonging their process of dying.

    It's really sad when families can't accept this and focus on easing their child's suffering rather than trying to prevent the inevitable. It's very all on all involved -- and only gets harder and messier as time passes and the child's condition deteriorates. It's one of those things that contributes significantly to NICU burnout and adds millions of dollars to our healthcare costs.

    What really makes me angry is when outsiders -- who don't have enough knowledge to have an informed opinion -- get involved and start throwing monkey wrenches into the situation. Such people only make it harder for the healthcare team to help the parents acknowledge reality so that they can be a help to their child.

    I've coached more than a couple of parents through that process and have always told them that helping their baby to have peaceful, comfortable death was one of the hardest thing a new parent could be asked to do. But by finding the strength to help their baby in that way, they would be the greatest parent they could be for that beloved child.
  10. by   AmyAnn00
    Quote from Emergent
    This case is just an extreme example of our hope that medicine will save us from life's imperfections and from our own mortality. And even in the obviousness of the futility of it, the religious people are wringing their hands and having a gnashing of teeth over it.

    True spirituality, in my opinion, is finding inner peace in the face of adversity. I don't think it is clinging to life, through technology, at taxpayer expense, while children are wanting for a bowl of rice and other parts of the world.
    Even from a religious view - shouldn't the child be let go when "God sees it to be fit?" Clearly the child is kept alive by technology and isn't "God's will." I was surprised to see how many parents supported the family when the baby clearly is in pain. It's a hard choice to make but it's the best choice for their son.
  11. by   KelRN215
    Quote from AmyAnn00
    Even from a religious view - shouldn't the child be let go when "God sees it to be fit?" Clearly the child is kept alive by technology and isn't "God's will." I was surprised to see how many parents supported the family when the baby clearly is in pain. It's a hard choice to make but it's the best choice for their son.
    Many years ago, when I worked in the hospital, we had a young patient with a diffuse intrinsic pontine glioma, 100% fatal brain tumor. Her parents sacrificed everything they had to bring her to what they read was the best hospital for her. From the beginning, the Neuro-Oncologists were up-front and told them that we had nothing more to offer her than her local doctors could have. Parents would not accept this and insisted on everything. They kept saying that they had to do everything because only God could decide when to take her. Before she was trached, her Neuro-Oncologists tried to explain to her parents that God was taking her now but they insisted on a trach/vent. The Ethics team was consulted and they sided with the parents because they knew that a trach/vent wouldn't change the child's prognosis. She died shortly afterwards, trached and vented in the ICU. Care was withdrawn after she was declared brain dead.
  12. by   hppygr8ful
    Quote from AmyAnn00
    Even from a religious view - shouldn't the child be let go when "God sees it to be fit?" Clearly the child is kept alive by technology and isn't "God's will." I was surprised to see how many parents supported the family when the baby clearly is in pain. It's a hard choice to make but it's the best choice for their son.
    In all the stories have seen there is no objective evidence that this baby was in pain. That he has a terminal condition and will die without life support does not mean he was in pain. Still I think taking him off life support was the best decision for this family.

    Hppy
  13. by   AmyAnn00
    Maybe not in pain per se (although who knows, & some doctors have said he is suffering if I remember correctly but could be wrong) but with an extremely low quality of life. Can't breathe, swallow, hear, or see on your own? I can't imagine living that way. I'm just stunned that the hospital staff is receiving death threats when they are trying to do the right thing (but I guess that's subjective).
  14. by   AmyAnn00
    Quote from KelRN215
    Many years ago, when I worked in the hospital, we had a young patient with a diffuse intrinsic pontine glioma, 100% fatal brain tumor. Her parents sacrificed everything they had to bring her to what they read was the best hospital for her. From the beginning, the Neuro-Oncologists were up-front and told them that we had nothing more to offer her than her local doctors could have. Parents would not accept this and insisted on everything. They kept saying that they had to do everything because only God could decide when to take her. Before she was trached, her Neuro-Oncologists tried to explain to her parents that God was taking her now but they insisted on a trach/vent. The Ethics team was consulted and they sided with the parents because they knew that a trach/vent wouldn't change the child's prognosis. She died shortly afterwards, trached and vented in the ICU. Care was withdrawn after she was declared brain dead.
    Really sad story. I guess it is in every parent's nature to want their child to live even when science says differently. In my opinion though health care providers should intervene when it begins to harm the child, without so much negativity from press and prominent figures in our society. It's not like we get joy out of the situation.
    Hope those parents are OK though.

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