Charlie Gard – anguished dilemma

 

There’s a heart-rending struggle going on over baby Charlie Gard, 4 Aug 2016, suffering from a rare genetic condition which has left him unable to see, hear, move, cry or swallow, and reportedly has fits that are difficult to control. London doctors had said that his life support should be switched off because there is no chance of his condition improving. Several appeals from the parents, who have crowd-funded over £1 million for experimental US treatment, through the courts failed. Donald Trump and the Pope then stepped in to say they wanted to help. Now the hospital says it is willing to explore even this untested treatment and is returning to the High Court on Monday.

Doctors can be wrong as they were over the cancer-suffering child whose parents ‘illegally’ took him to Czechoslovakia for proton therapy treatment. His cancer has now disappeared. But it isn’t clear in Charlie Gard’s case whether the possible treatment would just stop any further deterioration, rather than reverse his condition or cure him; and any potential side effects are unknown. A paediatrician wrote: ‘It is always important to ask the fundamental question that often gets forgotten in the emotion – what is in the best interests of the child? Technology can keep human beings alive for a long time but there is more to being alive than a machine inflating your lungs and a tube feeding you into your stomach or veins. Quality of life, dignity and humanity all need to be taken into account. I have seen many children over the years where, in retrospect, all that was actually achieved was prolonging the process of dying.’

There’s nothing much the astrology can say about possible outcomes. He was born with the Sun in Leo on the focal point of a Yod to Neptune sextile Pluto – indeed his Sun is exactly opposition the Neptune/Pluto midpoint, which Ebertin describes as ‘ a sensitive physique, peculiar diseases.’ He was also born at the time of the Saturn square Neptune which can have links with illness. Neptune opposes the North Node and Mercury (maybe Moon) in Virgo squaring onto Saturn and Mars in Sagittarius. His Jupiter in Virgo does trine Pluto and squares the Mars/Pluto midpoint, so he will be a fighter (or his parents on his behalf).

It’s an impossible situation for the parents and indeed doctors. But not improved by either Trump (ironic given what he’s trying to do to Obamacare); or the Pope, who somehow overlooks the fact that left to God Charlie would be dead already.

19 thoughts on “Charlie Gard – anguished dilemma”

  3. I’m an RN who has taken care of children with terminal illnesses, 11 months on life support is a long time for a baby, it’s a horrible thing to witness. As a mother I understand the primal need to protect your child, as a nurse watching beautiful souls trapped in defective bodies is horrible. I don’t think religious or political leaders should give the family any false hope, I have seen the damage that can also create. My prayers go to little Charlie & his family.

    • What you say is surely the ethics of this case. It is a sad day when society is prepared to experiment with untested chemicals on a severely brain damaged baby. ”Love is proved in the letting go” Cecil Day-Lewis

      • A number of children are already using this treatment, some with high degrees of success. It is only Charlie’s particular strain of the condition that is so far untested. He has a rare strain, and is only the 16th baby to be diagnosed ever. The others 15 babies all died without receiving treatment. Eventually there will be a baby number 17. As Charlie’s MRI’s show, at the time the dispute erupted he did not have structural brain damage and the hospital has not presented evidence to show that he does now. If they are so convinced of their case, why don’t they prove it? How did they win they hands down without this proof? If the baby does now have structural brain damage, then his MRI’s prove he has developed it since the hospital seized custody and hed him hostage without treatment for so many months. It is a very long time to keep this baby alive without treatment. I fail to see what good has come from their actions at all.

  4. Marjorie: Thanks for this post. Charlie’s story reminded me of Sam Bern’s, who was diagnosed with the aging disease that prematurely kills children by aging them because of a lack of vital proteins. His parents, both doctors, took the opportunity to start research in finding a cure for Progeria. I first learned of Sam’s story from the HBO documentary, “Life According to Sam”.

    https://en.wikipedia.org/wiki/Sam_Berns

    Sadly, Sam passed away at age 17 in 2014. But Sam was inspiring as his parents as pediatricians gave him such a good quality of life for he the short time he was here. The story was fascinating as the audience saw his parents, especially his mother, go through the process of working with other doctors to try to get approval for a study to see if certain protein could stop the premature aging process in these children with Progeria. I deeply admired his parents and all parents, doctors and children were are born with seemingly incurable diseases. So heart breaking. We never know what God intends for any of us.

  5. Marjorie, there is so much more to this case than is being officially reported. I will say I think you have G-d confused with Mother Nature in your conclusion. Nature is G-d only in pagan beliefs. The baby is still alive thru an extraordinary, indeed miraculous turn of events. If he is still alive, then that is G-d’s will. I don’t think you understand how the combined power of Medicine and the State abuse their authority in this country. The hospital have kept this child alive on a ventilator for 7months, with no-one doing anything for him, just in order to victimise and crush this family, and win their argument. That is NOT in the best interests of the child. He has deteriorated in that period and they have compromised his chances. Only 2 months were required for the trial. If the baby’s such a hopeless case then the drug will not be effective and the parents would have said goodbye to him weeks ago already. The fact is that the hospital published false evidence re the extent of the baby’s brain damage in order to win their case. The parents have a gagging order from our corrupt, illegal family courts, forbidding them from telling the truth as “in the best interests of the child”, his medical privacy must be respected. On the morning of his execution, the parents published the baby’s MRI anyway. He’s in pretty good shape as it happens – much better than expected, and he absolutely does not have structural brain damage! The hospital administration are now crawling on their bellies to undo the mess they’ve made and avoid total exposure. Whatever your opinion of Trump, he did a very kind, honorable and ballsy thing in this instance. This is an exceptional family and these extraordinary events are an astonishing victory for Love. I’m blown away by what the people have accomplished here, but the connections in high places are that familys’ Trump card. Lotsoflove xx

    • Ainge, This really is tripe. I agree doctors can be arrogant and stubborn. But to talk of them deliberately setting out on a policy of victimising and crushing the family is nonsense. And the courts go on the best medical opinion they are given. Turning everything into a gigantic life-destroying conspiracy theory is allowing emotion to over rule sense.

      • No – Life at any cost is allowing emotion to rule over sense, but there has been a miscarriage of justice in this case. There is a reason this case has achieved such prominence and attention. The doctors at the hospital did support the parents and intended to perform the treatment themselves. This is not about front line staff. This is about the administration who did not approve the treatment, and took custody of the baby to prevent the parents seeking the same treatment elsewhere. I can assure you, if the hospital were on solid ground, that baby would be gone already. The legal u-turn they are about to perform is completely unprecented and most certainly is not down to a victory of emotion over sense. You can research it yourself, before forming a final conclusion – no need to take my word for it.

        After the hospital won the case, they withdrew the previous options for palliative care and refused to let the parents take the baby home to die or even to a hospice. They also refused them an extra day to allow family to get into town to say their goodbyes, and gave the parents a flat 24hrs, and this immediately following a very brutal, sudden and unexpected slap-down from the European Court who refused to even hear the case. Had the administration conducted temselves with more propriety and sensitivity at that time, they would most likely have got away with it, but it seems that was the final trigger for higher intervention.

        I’m not defending Trump’s politics. I undertand the subject of American children under Trump’s healthcare is a very sensitive issue, and that his actions are unquestionably incongruent. However, taking each case on it’s merits, I, for one, am delighted this family got the help they deserve : )

        • ‘Supporters of the family have been using social media to share two of Charlie’s hospital brain scans, which indicate it is ‘normal’. But while the scans are genuine, they are dated October 19, 2016, and January 6 this year.
          The London medics say at that point they were willing to try the American therapy themselves, but then Charlie began suffering repeated brain seizures. These went on from January 9 or 10 to January 27, during which time the doctors believe structural damage was caused to his brain.
          One of them described in court how Charlie was not brain dead, but ‘persistently encephalopathic’ – in other words, tests showed no usual signs of normal brain functions such as responsiveness, interaction or crying.
          But Charlie’s parents insist he does move in meaningful ways, and reject the diagnosis of brain damage.’
          DMail

  6. So right, Jo. This child should be allowed the dignity of dying. Hopefully the parents can have another little one. It doesnt sound as if a cure can sort this childs problems out, only a miracle and few enough of those in this faithless age!
    As for Trump! ..

    • Agree, Loretta. The parents want the courts, the hospitals, doctors, research facilities, and world leaders to give them a “palliative hug”, because there is truly nothing going to undo this for the baby. No one knows if the baby is suffering, if the baby believes in god, if the baby wants a life of severe, unrelenting disability. The baby has no input or say in the matter. This is all about the parents, and their grief, and their hopes, and their beliefs.

  7. Thanks Marjorie. I heard that Charlie isn’t on painkillers so, if he’s not in pain, then why not try something else? I don’t know if that is amoral or not but I’m of the belief if a person or animal is in constant pain then the humane thing is to put them out of their misery. If there is no pain, or very little, try something at least. Perhaps from the medical point of view was they don’t know where else they could take the situation because there is no medical science/help beyond this point. It just looks cruel to prolong his condition. So, I understand their side. But, I also get the parents wanting to fight inch by inch for their child.

    And yes, agree on the Trump reaction. If that narcissist is not creating drama for himself to be at the centre of, he’ll plonk himself right in the middle of somebody else’s and try to make himself look like a bloody hero.

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