Pres. Trump offered help in the case of Charlie

La Reppublica is reporting that Pres. Trump has offered his help in the case of Charlie, struggling for life, state pitted against parents.

Also, the famous pediatric hospital Bambino Gesu said that they are ready to receive him for whatever time remains him.

This has been a sad case to watch.

Prayers.

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44 Responses to Pres. Trump offered help in the case of Charlie

  1. Boniface says:

    Pope Francis, too.

  2. Barnacle says:

    Please can someone explain what’s going on here. Charlie doesn’t “belong” to the state or the hospital, he “belongs” to his family. They have all the finance they need to facilitate his transfer to the US, so surely they can just do it? Surely no one can stop them? It doesn’t make sense to me.

  3. LDP says:

    I have seen this in the news; Charlie is in my prayers. Very sad.

    This so-called ‘turning off the life-support’ has been on my mind for the last few days. Not – I emphasise – in anyway referring to this case directly, it seems to me that this life-support issue is more complex, nebulous and requiring of discernment than euthanasia/assisted suicide. I wonder whether there could be a certain arrogance, a certain apotheosis in fact (in some cases), involved in artificially and indefinitely keeping the body alive when it can no longer naturally sustain itself.

    These are only some of my initial, personal thoughts on the issue though. Any insightful or authoritative views on the subject would be much appreciated. If my thoughts on the matter are erroneous, as well they might be, then please correct me.

  4. SanSan says:

    From what I understand Barnacle, in the UK and in socialized medicine throughout the world, the doctors and hospital can override the Parents. Heck, even in America you can have children removed from your home if you refuse to vaccinate them! In Canada, they just passed a law that a child can be removed from his/her parents if they refuse to allow “transgendering” them. It’s an insane time. We must fight back for parental rights and religious rights.

  5. Akita says:

    Dear LDP,

    Baby Charlie has a extremely rare variant of a rare disease. There is an oral medicine protocol available in the USA which offers Charlie a glimmer of hope. His parents have raised the money needed to pursue this treatment which MAY save his life. The socialized health system in Britain will not release him from the hospital where he seemingly is on ventilatory support and where the state is financing his care. His parents are being prohibited from pursuing treatment abroad for their son.

    Even if there is scant hope that the treatment will be a success, Charlie’s mom and dad should decide and should have sole jurisdiction over their son. The state is demonstrating EVIL overreach.

  6. Akita says:

    Rereading your comment, LDP, you may be saying that a life on a ventilator may not be worth living (unduly burdensome) so perhaps the state is justified in prohibiting the child be treated. I don’t know what hope the treatment offers but at this point Charlie’s parents should decide. The boy should be given a chance if one is offered and the parents want it.

  7. AnnTherese says:

    It’s probably far more complicated– medically, it’s very difficult to move a ventilated child out of the hospital, much less to another country. It’s possible the doctors believe he wouldn’t survive such a journey.

  8. stephen c says:

    LDP – in brief: there are very few conditions which are so severe that any competent doctor can say there is no hope for life. Informed people believe the baby in this case does not have such a condition. However, in England, there is a weird tradition of cold-hearted mob rule, coupled with a great subservience to the authorities, which is why that sad nation’s newspapers are so full of “news” about how someone or something has been declared “wrong.” In the present case, some of the newspapers are probably trying with all their subtle might to declare the child’s parents “wrong”. They want to marginalize the doctors who believe the baby can be saved and they want to force the parents to go along with their idea that, for the sake of the healthier among us, some less healthy lives are not worth living (not their own, of course…). Do not trust them.

  9. Chuck Ludd says:

    This is a very complex case. A few points:

    1. Everything I have read suggests the baby is surviving solely by extraordinary means and there is the slimmest of slim chances that an experimental treatment might help the baby (the articles are very unclear how the experimental treatment might help). The parents must go to great lengths and spend great sums of money in order to obtain this slimmest of hopes. The circumstances suggest that it would not be improper for the parents to decide to “turn off” the respirator (extraordinary means).

    2. Even though turning off the respirator would not be immoral, this decision must solely be the decision of the parents and not the state. The state could intervene if it were the other way around — if the parents were denying the baby ordinary means, for example, not feeding the child at home — then the state could override the parental actions. But that is not the case here. The parents must make a difficult decision between two moral acts: (a) take the baby off the respirator or (b) transfer the baby to the U.S. for the slim chance of some type of good outcome.

    3. The state’s viciousness is even more on display when contrasting this case with a situation where the state might decide legitimately to withhold treatment. Say the situation did not involve a respirator but the need for medicine in a tablet that is a scarce resource and there are more babies needing it than tablets exist. The parents want the tablet for their baby. Choices must be made. It seems the state could legitimately divide up the tablets and decide which babies receive the tablets and which do not — of course the state would need to provide some type of just criteria by which it makes the decision. That would be a case of scarce resources where the state might withhold treatment from a patient (because there isn’t enough to go around), but we are not dealing with a scarce resource. There are plenty of baby respirators and baby hospital cribs/beds in London so that Charlie is not depriving any other baby of treatments.

    4. Having said all that, I do not find the Pontifical Academy for Life’s statement last week too troubling. If it had a troubling part it was the lack of emphasizing that the state must not decide to remove the respirator but the parents. But if the statement is read as an ethical consult as to whether it is appropriate to remove the extraordinary means, then the statement is fine. Indeed, there is a statement in it which I believe we will need to wrestle with more and more in this age: “the limits of medicine” in the context of aggressive medical procedures balanced against a very small chance of a good outcome. There are many experimental/investigational treatments that hold out false hope and it would be better for both the patient and the common good not to chase after them.

    5. As new experimental drugs become accessible but access to them becomes quite expensive and still yet good outcomes are somewhere a tick north of nil, the moral wrenching is the price of modernity. We do not have a right to every type of health care nor do we have an obligation to seek to try every type of health care. Who decides? Sometimes the state can decide, sometimes it must not. In the case of Charlie the state must not decide.

    We must pray for Charlie and his parents. Our Lord certainly has Charlie in his hands and his spiritual reward is likely as close to predestined as it gets, so it seems to me it is the parents who need our prayers even more than Charlie, and dare I say it is the NHS administrators on the verge of an evil act who need our prayers even more than the parents. Whatever the parents decide, let us pray that the NHS does not take the decision away from the parents.

  10. KateD says:

    We always here about royals visiting sick children. If it’s not just about publicity, might not this be a good time to use up a bit of that PR capital to help this family?

    With the Vatican and President Trump weighing in, the silence of public figures in GB is deafening.

  11. Akita says:

    Ann Therese:

    Far, far less stable babies than Charlie are transported by helicopter or “fixed wing” while on a ventilator and reach their destination alive. I think transport with a trained pediatric intensive care duo would keep Charlie safe. As I understand it his parents are able to cover this cost. I think you have cast a red herring.

  12. TonyO says:

    What Chuck Ludd says is correct.

    The state is taking on itself the decision of what is “best for the child” not because the parents have failed their obligation to do so, but because the state simply thinks they made a minor error of judgment. The state doesn’t have that authority.

    In this case the chances of gain for the child over and above the prolongation of life are extremely slim. But the “mere” prolongation of life is not NOTHING, it is: life. The state is treating that life as nothing. It is consumed by the utilitarian mentality that life is “good” only if it is good for something else that is enjoyable, like pleasure.

    The Pope’s statement is better than the statement from the Pontifical Academy for Life. The Pope’s spokesman said:

    “The Holy Father follows with affection and commotion the situation of Charlie Gard, and expresses his own closeness to his parents,” reads a statement issued by Greg Burke, the pope’s spokesperson.
    “He prays for them, wishing that their desire to accompany and care for their own child to the end will be respected.”

    This is very nice. However, if you read it carefully, you will see that nothing in the statement unambiguously supports the theory that the parents right to decide what is best for the child is being supported. What the Pope says is that he supports their “desire to accompany and care for” Charlie. While “care for” can of course include taking him to the US to be treated, it can also be interpreted as “continuing to provide what minimal ‘care’ that can be provided while the hospital removes the ventilator and he dies.” Note that “accompany” does not imply ongoing medical treatment, it is what the Pope uses for simply being with someone as they suffer.

    The Pope could have, very easily, added words that were unambiguous, such as “make decisions for” or “exercise their parental authority to” and things like that. The fact that the Pope chose to be ambiguous about it means that he did not intend to clearly and forthrightly support the parents’ rights in these matters. When your speech inhabits the country of generic platitudes like “desire to accompany” (there’s that ‘accompaniment’ again), without ever addressing the specifics and without ever mentioning principles, you can’t testify to the whole truth.

  13. AnnTherese says:

    No, Akita, I am not. I’m simply saying, like others here, that this situation is likely more complicated that what is being reported. And based on my medical experience, even what you suggest isn’t as easy as it sounds. Money doesn’t solve every problem.

    There is also a question of stewardship of resources. And, our approach to “saving life at all costs,” vs. accepting dying and death as a natural part of life. Losing a child might be the deepest sorrow ever… I wouldn’t judge these parents for wanting to do everything in their power to save their son. But, sometimes “saving” means setting a child up for years or a lifetime of hospitalizations, surgeries, pain, debility, and other forms of suffering– a quality of life we all dread. Yet, I know that can come from a place of love (and fear) and faith.

    The expertise of medical staff needs to be considered, as well as use of resources. I would hope the hospital’s ethics team is working closely with all involved.

    I guess I’d be careful with demonizing GB’s healthcare system. America doesn’t seem to be on a good path in that regard, either. If things go Trump’s way, our hospitals will be forced to do less and less good to help less and less people. Even now, doctors’ hands are often tied by insurance companies. It’s ironic that Trump is willing to help this child in GB while writing a death sentence for so many children in the US who won’t be insured if his plans succeed. Of course, this is simply a PR move for him. Still, the irony.

  14. Sancta Missa says:

    Let’s ask for a miracle for little Charlie Gard through the intercession of the Venerable Fulton J. Sheen.

    “Eternal Father, You alone grant us every blessing in Heaven and on earth, through the redemptive mission of Your Divine Son, Jesus Christ, and by the working of the Holy Spirit. If it be according to Your Will, glorify Your servant, ARCHBISHOP FULTON J. SHEEN, by granting the favor I now request through his prayerful intercession the miraculous cure of Charlie Gard. I make this prayer confidently through Jesus Christ,our Lord. Amen.”

    Have you heard about this? http://www.catholicherald.co.uk/news/2014/07/01/fulton-sheen-and-the-miracle-of-baby-james/

  15. The Masked Chicken says:

    I left a rather scathing commentary about the British medico-legal system on another blog (What’s Wrong with the World) that I won’t repeat, here, but needless to say, this situation became moot the moment that the parents had ample funds to transport the child to the U. S. Had the parents been rich and Charlie had been in a private hospital, this whole situation would have never happened. This situation is being cause solely because the parent are of modest means and trusted the socialized medicine complex. This is one instance where poverty is allowing the parents to be walked all over by the hubris of the medical community.

    Exactly what does the State hope to gain by inserting itself in this situation? What? Clearly, it is not a resource question, since the parents have ample resources due to contributions from external sources. If the State needed the hospital bed, then they should let the baby and his parent leave.

    In fact, the State is, not to put too fine a point on it, calling the baby’s parents idiots, in need of becoming moral wards of the State, because, clearly, they are too stupid to realize a hopeless situation. The degree of patronizing behavior and condescension by the State (by this, I mean the medico-legal establishment) is nauseating. This is a violation of the Natural Law giving parents normal and reasonable governance over their children.

    Is this extraordinary care that may be removed? Just because someone is on a ventilator does not, a priori, mean that this is extraordinary care. Christopher Reeves, the actor, was on a ventilator for the last few years of his life because of a spinal injury. If he had been in England, would they have pulled the plug, just because he were on a ventilator? Clearly, other issues have to be taken into account. Is an experimental drug always extraordinary treatment? If a drug has shown to be both effective and the only treatment for a disease, one can quibble about the legalities of government approval, but, in all senses that matter, the, “extraordinary,” drug is the ordinary method of treatment, since it is the only one anyone would consider. If a drug is only marginally effective or there are other treatment options, then one may cross into the drug being extraordinary means. In this case, where the treatment is highly effective for a related form of the disease, no statistics are available for the gene variant, so its exact status as being extraordinary or ordinary are not known. In this case, one should err on the side of risk, because one has nothing to lose and, if the treatment works (it has never been tried before on this gene variant of the mitochondrial disease), then it would have been an ordinary means, all along, just unknown until it were tried.

    There are two other problems with the interference of the medico-legal establishment. First, off, England has a population replacement level of 1.4 babies per couple. A large segment of the population is not attuned to the drives that come with being parents. They do not understand the self-sacrifice that goes with the charism of being a parent. This means that the sensitivity to parental intuition is largely lacking in the society-as-a-whole.

    Secondly, a friend of mine teaches medical ethics at a major medical school and she has told me that many medical students are, how shall I put it, ethically challenged. The are not capable of thinking beyond the guidelines given them by their clueless or even worse biased medical associations. Of course, in some cases their hands are tied by legal rulings, but in many cases in recent years, quality of life arguments are what most of them go by. This is a branch of diluted hedonism, in reality. By all accounts, Winston Churchill suffered from debilitating depression, so he had a miserable quality of life. Should he have been euthanized? In Denmark, I think, a bill was recently passed giving doctors just such a right for mentally ill patients.

    I do not wish to paint all doctors so broadly. There are many compassionate doctors and a few who really understand the Christian ethical perspective, but in this case, they are not particularly on display.

    Heck, the stupidity of this situation makes me want to hit someone. What is the worst that could happen? If they let the parents come to the States and try the treatment, it will either work or not work. If it works, then the parent should expect an apology from the State; if it does not work, then the parents will be at peace when they remove the ventilator, knowing they did all they could.

    I ask, again, what does the State have to gain by this decision? I blame, primarily, the doctors who appealed to the State to decide the matter. They have shown a type of arrogance that should prevent themselves from practicing medicine, because, clearly, they consider their opinion of more value than anyone else.

    To say that I am angry would be an understatement. In a different reality, if the parents had been in the U. S. when their child became sick, I think the parents should have apply for asylum in the U. S. on the grounds that if they return to England, their child would be killed. This is medical totalitarianism. Nothing more, nothing less.

    Sorry for venting. This is a pretty simple case, not a complicated one as the media paints it. Anyone with half an ounce of compassion would just let the parents do what they think is best, knowing that it would give them peace, in the end. Their desire is not irrational and certainly one reasonable decision among many. In my opinion, the State does not have a case. All they have is power. Any claim to authority they had went out the window when they they decided to help themselves instead of the parents.

    The Chicken

  16. The Masked Chicken says:

    The last paragraph should read:

    …one reasonable alternative among many.

    The Chicken

  17. Bender says:

    It should be noted that Charlie is NOT dying, and the use of the term “life support” is therefore misleading.

    Rather, he has a condition of diminished lung capability that requires some assistance. In this, he is just like many other people — beginning with those babies in the womb whose lungs are not yet developed enough and including also every one of us. We ALL require some degree of assistance to live. The food we eat, the clothes we wear, the houses we live in — these are all “artificially” provided to us. The air we breathe in an airplane is “artificially” delivered to us by mechanical means. So are c-pac machines and air filtration systems and systems meant to provide a certain air pressure in the room. And none of these are considered “extraordinary” or “life support.”

    Charlie is not dying. So this news “reporting” that says this is about “allowing him to die” is fake, as is any mention of palliative care or “extraordinary means.” We are all interdependent. That is what is the “ordinary” state of life.

  18. AnnTherese says:

    The medical staff is first of all bound to advocate for the patient. If they have sufficient reason to believe the child is suffering or will suffer, they are going to fight for him.

    I guarantee we don’t know the entire story. The arrogance is ours if we think we know with certainty who is right and wrong. You are not there. You’re just reading the news.

    Our prayers for wisdom and strength for all involved, for real listening and understanding, and for the assurance that Charlie is cherished by God– are what we can best offer from here.

  19. Liz says:

    Prayers for Baby Charlie and his family! So hard.

  20. JustaSinner says:

    The Devil is laughing; the tears of Charlie’s parents are a rich nectar to the Dark One.

  21. mike cliffson says:

    Anne Therese -you little know what you seem to be wishing for. Some people may die without obamacare – NHSs with death panels mean this case daily but quieter.
    Folks : There are two issues : the smokescreen using what is touched by Catholic doctrine :”Thou shalt not kill,but needst not strive/officiously to keep alive” .Evidently a case like this child’s is of itself difficult.There are under a hundred known cases as I understand it- noone really knows all that much about treatment. And this isn’t the first time parents have got in the way of the that jewl in the NHS crown , Gt Ormond St (childrens’ hospital GOSH,) playing almight benifient gracious God, one time was just after GOSH had a starring role in the NHS section of the London Olympics’ opening ceremony.
    Masked chicken et al very right in saying that UK has become mesmerized by a ghastly pagan concept of “quality of life” without a minimum of which patients should be left untreated , or murdered by the liverpool pathway if they tiresomely cling to life; quite diabolical, and quite normal people catholics included quack it. (All worth debate and clarification by the great and the good , no doubt, and noone else, enough so for only fools to rush in where others fear to tread.Good for the Pope say I)
    This does not justify what I consider the major issue : the continued encroaching enslavement of a once rebelliously free people, to diabolical murderous and anti natural law and antifamily lengths . Once making a child patient a ward of court was, by legislators’ intention at least ,prolife, to treat children parents did not want treated or at least not in aparticularway, such as blood transfusions for children of Jehovahs witnesses when without which a very broad concensus thought the only alternatives death or the gravest disabilities.
    BUT in this case the parents are denied all rights over their child by the fiat of ONE set of NHS doctors at GOSH on the grounds that the child’s best interests are served by doctors , not parents ,in the first instance, AND that these best interests are served by being allowed to die already by means of withdrawal of medical support for breathing.ALL the preceding being “blessed “in this case by the UK ‘s supreme court AND the European Union’s! A Death panel, validated to the highest secular levels.
    The parents MAY have been wrong in doubting the doctors’ godlike omniscience on even the rarest of diseases, they MAY have been wrong in finding a ray of hope in experimental stateside treatment of a similar disease, they MAY have been wrong to find the money they themselves hadn’t got, (little people!) they MAY have been wrong in considering that like lorenzo’s oil, the treatment might be of little or no benefit to their child BUT gain knowledge of benefit to others later , (I don’t know if the pontifical academy for something or other agree with that (utilitarian?) moral consideration)
    but
    even if they were wrong on all counts ( and I doubt it) have they not, by natural law alone, the right to be mistaken in persuit of their own ofspring’s best interests?
    Parental power and rights have been globally removed for contraception and abortion for underage offspring, for “gender” description in school, for a whole raft of devilinspirit devil worshipping….. i This case, a set of doctors, the nhs establishment go along the death panel road, the totalitarian road, the antifamilyt road,,,, because they can? as proud control freaks?, the establishment/deepstate protecting itself all the way down ? to punish little friendless people for daring to think they were even a tenth free? It boots not because, like all of us at times the devil can blind them as an angel of light.
    The whole process is diabolical.

  22. The Masked Chicken says:

    AnneTherese wrote:

    “The medical staff is first of all bound to advocate for the patient. If they have sufficient reason to believe the child is suffering or will suffer, they are going to fight for him.

    I guarantee we don’t know the entire story. The arrogance is ours if we think we know with certainty who is right and wrong. You are not there. You’re just reading the news.”

    As I tried to explain, above, “advocating for the patient,” by some doctors has become morally ambiguous due to recent trends in medical ethics.

    As for whether or not we know the whole story, that is not clear. Even high school biology now teaches some things about mitochondrial DNA (mtDNA) to their students. Most college biology students know at least a little about oxidative phosphorylation and the electron transport chain, although the exact biochemistry is very complicated and not completely understood by anyone. There are many articles on Google Scholar related to mitochondrial depletion syndrome, which, in itself, says little, because this is a generic name for a much larger class of genetically-derived illnesses. Mitochondrial DNA is passed on through the mother and, ironically, it was in England that experiments in spindle mtDNA replacement in vitro were approved to try to replace the original mother’s mtDNA with that of another mother’s, in effect, making the baby the product of 3 people (one father and two mothers). There are ethical problems with that.

    My point is that the etiology of this particular Mitochondrial Depletion Syndrome is fairly well understood by many people, even if the underlying cause may not be (we know some possible causes of this class of illnesses in a general sense, but genetic variation will make each individual’s symptoms different).

    What is there to know, really? The baby has a rare disease. it may or may not be treatable by current genetic therapy (probably not). There isn’t much more that doctors know than this, other than the general progress of this type of disease if left untreated. It is not arrogance to say what is right or wrong. The parents, clearly and unambiguously according to Natural Law theory and Catholic moral principles, have the responsibility for the well-being of their children unless they forfeit it by immoral actions. The Gards have done nothing immoral. Their reasoning is sound, if a little desperate. They are not mentally incapable of arriving at a reasoned conclusion. It is they and they, alone, in this case, who have the moral high ground.

    No, I don’t see any arrogance is saying what is normal Catholic moral reasoning. The fault lies totally with the doctors, who, in my opinion, are not proceeding according to right reason and more likely to be arrogant than the parents or even people reading newspaper articles, some of whom have had experience with either the science or the medical condition. Again, what possible good do they think they are doing by not letting the parents try this one last thing? It is the last option, after all. It will not hurt the child. Anyone worthy of the name of healer would let the parents try this. If it doesn’t work, it doesn’t work. The parents are not going to try to keep the child alive if the treatment in the U. S. doesn’t work. How could they? Babies who have mtDNA deficiency this severe will, almost always, die young. No, they will say goodbye and let him go.

    The entire issue, here, as far as I am concerned, is the invasive nature of the medico-legal establishment. As I said, above, this story would never have come to light if the couple had been rich. Indeed, the doctors would have been afraid of the parents. No, this is a case of improper authority run amok over the poor.

    I cannot go into more discussion on this issue without getting into topics that could become personal, but I have seen this pattern played out, in a similar situation, before – one where I had some expertise related to the medical issue. It didn’t matter. Expediency won out over sound reasoning and the patient was killed. I am sorry that I sound so passionate, but unless you have had the experience of racing against the clock to stop a steamrolling legal system, you don’t know how bad this situation can get. If I live long enough, I hope to write an essay on that situation. It may be the only thing I can do for that person.

    The Chicken

  23. Kathleen10 says:

    The Almighty state has decided that Charlie Gard must die. If Charlie Gard is transported to the US, which can certainly be done with the amount of money the parents have raised, and he gets BETTER, that would be bad, for the Almighty state, because it would have been proven the Almighty state can be WRONG. If people then question the life and death decisions of the Almighty state, well then, that would also be a bad thing, the Almighty state doesn’t want that.
    It wants to decide if you live and breathe, it doesn’t want you weighing in on those important decisions. You are not qualified.
    So no, Charlie Gard must die, to that end. So they are going to slow-walk this, hoping nature takes it’s course.
    We should take note of the humanitarian act of President Trump, who once again took pity on a critically ill child and offered to transport him. He did that using his own private jet, way before he ever thought about being president. A very ill child needed to be transported and he made it happen. He has a huge heart for people, and definitely for children.
    He came off as more compassionate than the pope or the Pontifical Academy for Death.
    Dear God, help this poor child and his family. Amen.

  24. AnnTherese says:

    Masked Chicken, I’m sorry for the difficult circumstances you experienced, and can understand that this story triggers strong feelings for you.

    By “the entire story”– I’m thinking of how a particular diagnosis can play out differently in each child– and many other conditions can come into play as a result, eg organ failure, respiratory distress, etc. In pediatric medicine, there is nothing as plain and simple as a textbook understanding of s diesease, except maybe a bone fracture. Mitochondrial diseases are particularly complex.

    We certainly do not know the entire story or history of these parents. Are they good parents with loving intentions? Proabably. But, earlier in these posts it was brought up that parents have been villainized for not getting their child vaccinated. Their choice? Well, I’ve seen a child dying from tetanus infection, while his parents told doctors they would still never vaccinate their children. I share an office with a social worker who is on the phone several times a day with CPS due to parents’ poor choices. Perhaps the medical staff know something about this situation that is not or cannot be revealed to reporters.

    Lastly, being on a ventilator/respirator is tricky– putting it mildly –especially with children. You just don’t wheel someone onto a medical plane and take off for another country (or just home) without a great amount of planning, preparation, and risk. I see this over and over, working in pediatric medicine.

    All that said, it’s possible Charlie and his parents are being treated unfairly by the hospital/system.

    But there are likely numerous factors that will not or cannot be shared with the public.

    Don’t judge.

  25. hwriggles4 says:

    This reminds me of the rescue of Baby Joseph that took place several years ago. Baby Joseph was brought from Canada to a U.S. hospital for treatment. Fr. Frank Pavone’s group Priests for Life was involved with organizing this rescue.

  26. chantgirl says:

    AnnTherese- Some of us have already lost our health insurance due to Obamacare. In our situation, my husband had a good job with health insurance provided as a benefit. After Obamacare passed, his small business employer was no longer able to provide full time hours or health insurance as a benefit. Our insurance premiums would have have been more than our mortgage payment, and the deductibles would have been so high that we wouldn’t have been able to afford to go to the emergency room or have a surgery if one of us had needed one. He lost 30% of his salary to hours cuts since Obamacare reconfigured full time to 30 hours/week. Even if we could have afforded the premiums, we wouldn’t have been able to afford to actually use the insurance. Now, we have a Christian health sharing program which is not insurance but keeps the IRS from fining us an ever-increasing amount every year. I still may not be able to afford treatment sometimes (anything under a $400 health bill I have to cover, so sometimes I don’t go to a general practitioner when I probably should), but the premiums are far more affordable so I can still afford groceries.

    Quick question- I was under the impression that not only was the hospital wanting to remove the ventilator, but also wanting to stop food and hydration. Can anyone verify that?

    About Charlie, we can argue all we want about what treatment might be suitable/not suitable in this case, but that’s not really the heart of the matter. We are essentially talking about who Charlie belongs to. Is Charlie a ward of the state or healthcare system, or a child of his parents? This is a monumental overreach of the state. It needs to be resisted stridently, as it endangers fundamental human rights.

  27. Mary Jane says:

    AnnTherese, it is possible we don’t know the entire story, but I think there are things we can reasonably deduce. Are the parents good and loving with the best of intentions? You said “probably”; I say “absolutely”. How could they not be? Why would they be fighting so hard for their child and this cause if they were not good and loving parents? What other motive can they have other than trying to save the life of a baby they love?

    There are many reasons parents may choose not to vaccinate. I know several families who choose not to because they have a history of severe, debilitating reactions to various vaccines. Choosing not to vaccinate for tetanus when a child is dying from it, okay that is extreme and strange…but I just want to make sure that all parents who don’t vaccinate aren’t being painted as villains.

    CPS…I am sure there are very good CPS/social workers out there who have the best of intentions. That said, there are plenty of horror stories floating around of CPS workers who make poor decisions too, decisions that tear good families apart.

    Not to go down a rabbit hole with either of those tangents, but since you brought them up I just thought it was fair to paint the picture as it is.

    Charlie is his parent’s baby. They, not the hospital, should have decision making control over the situation. God give them strength and courage and peace.

  28. AnnTherese says:

    Mary Jane, I’m not convinced you’re painting the picture “as it is.” You are a bystander, informed by news reports. We’re not privy to the whole picture. You don’t know what it “is.” You have opinions like the rest of us.

    What’s interesting is how we flip our opinions when it suits us. If the parents wanted to withdraw life support on this child and the hospital felt there was reasonable hope that the child could improve, would you be supporting the parents? (Depends on the situation, from my experience.) We certainly don’t respect the wishes of a mother who does not want to give birth to her child.

    So, this isn’t really about the parents having control. We all know some parents might not always act on the best interest of their child– born or unborn. Hospitals don’t always, either. The best plans tend to be partnerships where all have a voice and work together to achieve what is best for the child/patient.

    This is about life– and discerning when to sustain and when to let go. Clearly, sadly, it’s come to be about power, too– at no benefit to the child at the center of it all.

  29. benedetta says:

    AnnTherese you say: “We certainly don’t respect the wishes of a mother who does not want to give birth to her child.” In fact, it seems the developed world is obsessed with helping mothers who do not want to give birth to their children to for a fee eliminate for any and no reasons, to the point of violence towards those who respectfully disagree.

    Of course, you may question whether parents should have the say, but ought a court, and governments, or rationed care systems, get to make that call based upon utilitarianism and economics? Obviously, this is the crux, not a rabbit hole debate about “the parents”. Secularized countries have rejected the role of parents for decades. This ship has sailed a long time ago, and based on nearly every measure of child health and even from secular authorities on the health of children, that denial to parents’ preferences over propaganda and nonsense advanced by The State has not been overall meaningful and good progress in terms of public health.

    As to “we just don’t know”, that’s all well and good, so, what are you doing here debating the news reportage in that case? Are the rest of us to shrug and go away because “we just don’t know”. That’s inane. People are entitled to well formed opinions on life, conscience, rationing of health care issues that tend to deny life and liberty, the pressures of propaganda and hate groups who oppose the lives of the unborn, and many other issues that this case raises.

  30. Mary Jane says:

    AnnTherese, you brought up parents who choose not to vaccinate and CPS workers, so I attempted to paint the picture “as-is” (as it really is) by saying that not all parents who do not vaccinate are villains and not all CPS workers are heroes, as you seemed to be implying that they are.

    You are also a bystander, informed by news reports. Are neither of us allowed to inform an opinion? Your opinion seems to be that we cannot form an opinion. We are all entitled to an opinion based on what we read. Based on what I have read, the parents wish to try another option to save the life of their baby. I think they truly love their baby and are good parents, there is no other motive they could possibly have for wanting to try another treatment option.

    I would not flip my opinion would it suit me, and I am surprised and quite frankly offended that you would write such a thing. If the parents wanted to withdraw life support and the hospital felt there was hope the child would improve of course I would side with the hospital (with life). My sympathies here lie with the life option, wherever that quarter comes from. And of course I do not respect the wishes of anyone who wants to kill their unborn child. That’s ridiculous, I don’t even know what to say to that.

  31. Mary Jane says:

    AnnTherese, perhaps we are speaking past each other. We both are saying that this situation is about life. I think perhaps you (wrongly) assumed that I would side with parents regardless of the particulars of the situation. Of course I side with life. In thise case, the parents are choosing a life option, so I side with the parents and believe the hospitals role is to support the decision the parents make, as much as is humanly possible. If the parents were choosing euthanasia or abortion or child endangerment or whatever, I would obviously not side with the parents.

  32. The Masked Chicken says:

    AnnTherese wrote:

    “So, this isn’t really about the parents having control…The best plans tend to be partnerships where all have a voice and work together to achieve what is best for the child/patient.

    This is about life– and discerning when to sustain and when to let go. Clearly, sadly, it’s come to be about power, too– at no benefit to the child at the center of it all.”

    No, this is not about when to let go of life. I heard this same argument when Terri Schiavo was being murdered. While the cases are not quite the same (Schiavo would have lived with ordinary food and hydration and this baby will not – it needs serious medical treatment), the attitudes that such cases elicit are all too predictable. One side wants to cling to keeping the patient in this life and the other side is ready to release them to the next.

    Invariably, it is the parents who want to keep the patient in this life and it is the doctors who want to cut the cord (I have never seen the scenario that you propose of the doctors wanting to keep the patient in this life and the parents wanting to let the patient go). It may be that in some cases doctors and parents can work together, but this is not one of them. The doctors and the State have appropriated to themselves an authority they simply do not have, not by God and not by Nature. They have usurped the authority of the parents and decided in their stead. Apparently, in the worst nightmare scenario of Child Protective Services, Charlie has a, “Guardian,” because, apparently, his parents can’t be trusted.

    This is not about life. It is about who controls the moment of death. The State has issued a death sentence to Charlie, since he cannot breath on his own. That is not their right. It is not the right of the doctors, either. If the Gards owned their own respirator and wanted to keep Charlie alive in their own home for a few more weeks while they try the gene therapy, who are the doctors to insert their noses into their affairs? They didn’t bring this child into this life. They haven’t suffered sleepless nights for it. They will not mourn for the rest of their lives when the child passes. You tell me who they think they are. Is this the new definition of child abuse – wanting a sick child to be given every possibility to live?

    These doctors say there are no more possibilities. Clearly, the parents are delusional, thinking this treatment will work. Poor, poor, parents. We must save them from themselves.

    I have seen cases where the doctors were wrong – provably, simply wrong, but because they were in control the patient had no say and the patient wound up suffering greatly, almost dying because of it. Who would the courts listen to – the patient or the doctors should it come to an argument about a course of treatment? The same patient, after getting out of the hospital got hold of the records and had them re-evaluated by an expert who, basically, said that the original doctors were incompetent. Subsequent testing proved that this was the case, but in the original hospital setting, those doctors were like the gods of old, holding a power and authority beyond even the truth. So say the Courts.

    Obviously, the diagnosis in this case is inescapable and the doctors have, by all accounts, been very diligent in making sure of it. I am not saying that the doctors in this case are negligent, in terms of the practice of medicine, but hard cases make bad laws. The doctors in another setting and another case could very well be wrong and this case sets a dangerous precedent. I was pointing out, above, that even when doctors are wrong, they are, often, given more credence than either patients or families simply because they are doctors. They come into the story with the deck firmly stacked in their favor.

    The doctors are basing their order (it is not merely a recommendation, anymore) to turn off the respirator on quality of life issues – a pernicious ethic that has invaded the medical establishment since the 1980’s. More and more of the general public, especially young people, are being sucked into the same hedonistic premises of the argument, basically, if you can’t do what you want anymore, then life is not worth living.

    Oh, I think we do know what is going on, here. You can, in fact, read the Supreme Court of the UK’s findings. It is in the public record, here:

    https://www.supremecourt.uk/cases/docs/charlie-gard-190617.pdf

    As predicted, they wrote:

    “c)
    the clinician in the US who was offering the treatment favoured by
    the parents conceded that the chances of its securing meaningful brain
    recovery were vanishingly small (para 105);”

    So, just to be clear, even if the treatment reversed the mtDNA depletion, because it could not correct the brain damage that has already occurred, Charlie’s life would not be worth living.

    This is heinous, callous. In a sense, this is exactly like the Terri Shiavo case.

    I’m sorry. I think we know all too well what is going on, here.

    The Chicken

  33. AnnTherese says:

    Seizures are very painful, and each time that baby has a seizure, his stats go berserk and his brain suffers more damage. I work in pediatric medicine and I’ve witnessed this often.

    I hope Charlie’s parents can take him home to die. But ventilated babies can spend up to a year in the hospital before they are able to adjust to a home ventilator, if they can do that. It’s possible they can’t get Charlie home safely.

    When all seems hopeless and out of our control, we know that God holds this child firmly, and that his death is a release into glorious eternal life. I’ve been with parents of some Christian traditions who’ve chosen not to put their child through prolonged or potentially life-saving treatments because they felt their child was suffering. One mother said to me, “He is suffering. This way, he will be with Jesus. Why wouldn’t we choose that over a life of suffering?” They chose to allow nature to take its course. Doctors didn’t agree. Ethics team got called in. The parents and elders of their community fought to bring the child home, and won. They didn’t want the machinery, just a simple, quiet death. The child died after being extubated, in the hospital, surrounded by his family.

    That’s not a particular case, due to HIPAA laws, but a composite of several cases I’ve been involved in.

    Have at your opinions! I had a lot of opinions, too, until I was working directly in critical care. Then I witnessed the agony of all involved– family and staff– as they fought for miracles for these children. Have your opinions, but hold open the possibility that there might be more to the story than you know; and just maybe, everyone involved has Charlie’s best interests at heart.

    Sometimes, the focus needs to move towards how to help this child and family experience a peaceful and beautiful dying in the most horrendous circumstances imaginable.

    I am absolutely pro-life. I think the medical world often goes too far to keep people alive at all costs. That’s not pro-life. I am also an advocate of not fearing death– for ourselves or our loved ones. Our culture runs from death or even talking about death and dying. Why? It is as natural as being born, and by fighting to the nth degree to keep a person alive, we miss out on the sacred and powerful process of dying, which is so full of God’s presence and love.

  34. benedetta says:

    AnnTherese, you have some unique qualifications as far as your experience that others reading the news do not have. At the same time many of us have some unique experiences with the intrusions of government and medical establishment today that really seek to override decisions for children’s health and well being that deprive family of the deferral and judgment that God grants and that is rightly theirs, and the secular evidence is that this practice has not been supportive of children’s health overall. You wrote that we do not respect women’s desires to “not give birth” which I find obviously contrary to the facts and also to be a statement not in line with prolife generally. You have not since clarified that statement.

    It’s really too bad that our secularly informed medical establishment pressures parents of unborn children to abort, sometimes even insisting on diagnoses which are inaccurate, based on insufficient evidence, and foreclosing the possibility of growth and intervention, which is really traumatic to mother and child and entire family. The medical establishment by far favors aborting children with even nominal or speculative “defects” rather than letting a terminally ill child pass peacefully away surrounded in and supported by their parents’ love. That is far from a pro-life practice and it is not pro human by any stretch.

    It sounds as if, taking your assertions at their very best, that you believe that non medical personnel, namely lawyers and judges for the doctors and the hospital, and health care rationing, are the places which are best suited to pass judgment finally on where and how this baby spends his perhaps very few days at hand on this earth. For many of us this is not merely a matter of having at opinion — a lot have already experienced the brutality of a totalitarian, dehumanized system which would pass almighty judgment upon one another’s quality of lives and potentialities on behalf of the more almighty State interest, and we understand that in the earliest stages and the last stages of life, and not just for extreme situations but passing temporary fully recoverable ones, this situation seems comfortable to substitute its own power for God’s or for loved ones. You may be very comfortable, given your professional experiences, with that state of affairs, and perhaps in certain parts of the world it is less ominous. But surely you can concede that the concern by many is well beyond what HIPPA (which is not really the same thing in England is it) tells us or what current practice might dictate based upon news reports. I’m relieved that you have zero ethical quandaries but I think the level of commentary here speaks to serious situations that have become all too common whereby people have experienced “care” which is devoid of compassion and seems quite hurriedly to dictate whether one lives or dies and justify all on utilitarian terms.

  35. AnnTherese says:

    Regarding abortion, I’m referring to parents who choose to abort their unborn child, and that we as Catholics do not support this decision of the parents. Culturally, yes, parents are supported. But the Catholic Church stands on the side of government making this illegal– even if it is against parents’ wishes. Correct? I’m sorry if that was unclear the way I stated it earlier.

    “I’m relieved you have zero ethical quandaries”– wow. So really, you’re not getting what I’ve been saying. That’s ok.

    Here’s a helpful article. You might choose to automatically disregard it because it’s in “America.” But I found it concise and correct regarding Catholic ethics.

    https://www.americamagazine.org/politics-society/2017/07/05/what-some-pro-lifers-have-overlooked-case-charlie-gard

  36. benedetta says:

    AnnTherese, my goodness, I am shocked that you as a health professional actually believe that the parents of an unborn child freely desire to kill their child in all cases. That is completely contrary to the secular evidence. Even odder is your idea that because the secular government encourages people for convenience sake, by fees to have their unborn offspring killed in utero, and that the Church insists on the dignity of that life no matter, that somehow this constitutes the Catholic Church’s blessing that governments should take on decisions in loco parentis to support its rationed utilitarian and largely atheist schemas. Wow. You are somehow weirdly saying that because we would rather see persons being able to live out their existence past birth, even if, say, a coercive abuser parent did not want to monetarily support that life, that automatically then it also follows that the Church believes that parents have no vital or primary role to play. Wow again. That’s bizarre. And totally false as to Church teaching. And, it’s a huge blessing that the Church does not permit the government all rights over all children at all times — again, the secular evidence is huge that the intrusions of government decision over family structures has been absolutely disastrous from a public health standpoint, for individuals, for children particularly. By all measures. I am not sure why you would prefer not to acknowledge the overwhelming evidence here.

    I note that your exclaimings (“Wows”) aside, you still have not addressed the crux of the issues. I don’t see that your link addresses this either. The “America” magazine longstanding has an ax to grind against the prolife movement — caveat emptor as to those who link and then click there. That it says “some prolifes” in its headline doesn’t really absolve them of that unfortunate that history or targeting which truth be told has much less to do with theology or human rights or women’s rights than it does back room partisan power deal making — alliances between power groups to win control over others. I suppose they intended to soften their guilt there by that headline, but in fact they have given voice, longstanding, to abortion advocates who desire to see the Church and Catholics just shut up and go away to let more children gone through abortion than all world wars combined become dead letter, and again, given the evidence, even by secular measures, this is inexplicable apart from power politics based in the US. Compared to even liberal schema of theology and basic human rights, humanism, their positions on life have been tragic, harmful, divisive, and intended to foment votes, not compassion or progress.

    Still, you seem to be unable to acknowledge the fact that lawyers and the court systems are very ill equipped to make quality of life or death issues for infants via proxy for the State or for families — even if you insist that the medical establishment is nothing but martyr-level self sacrificing, always ethical, and unfailingly compassionate and accurate and all knowing of all the factors involved in any complex case. Would you tell that to a falsely accused death row inmate? Just let the legal process do its magic and wait to die? That the State “knows best”?

    Your argument throughout here has been, stated over and over, and condescendingly to others with medical knowledge that you regard as inferior to yours, that “we just don’t know” the facts from news reports alone, and that medical personnel’s wishes are always to be prioritized in their say over parents. Fair enough, but we are still waiting for your explanation as to why you would let the almighty State, administrators and lawyers and politicians, be the arbiter of who gets to live as an infant and who gets to seek further care.

  37. benedetta says:

    If we all get to start posting links at this point, here is one, and one that doesn’t begin with an officious, finger waggingly stern condescending “what Some prolifers get wrong…” kind of smug superiority tone that nearly always winds up strangely supporting Orwellian bureaucrats in the name of a far better utopianized compassion than whatever you’ve got going kind of judgy puff piece…especially to those stupid sentimental non scientist annointing “parents”…and make up our own theology along the way besides, evidence of government failure to properly and helpfully rear children for us, in the days of science tech and progress no matter!

    http://www.catholicnewsagency.com/mamaneedscoffee/2017/07/on-charlie-gard/

  38. AnnTherese says:

    Benedetta, for you to claim that I “believe that the parents of an unborn child freely desire to kill their child in all cases” truly left me wondering what you think you read.

    Let’s move on. I’ve spoken my piece, and you, yours. We’re not going to change each other’s thinking. So, peace, Benedetta. And peace to Charlie, his family, and his caregivers.

  39. CrimsonCatholic says:

    “I think the medical world often goes too far to keep people alive at all costs. That’s not pro-life”

    So who gets to decide who should die and who should live? A panel of doctors, judges, or lawyers?

  40. benedetta says:

    Again though your wording sounds “nice” it reads as though you wish to shut down debate — just as before you indicated that people here should not have opinions because they “don’t know”.

    I think for you AnnTherese the belief that “we’re not going to change each other’s thinking” quite an appalling statement for a caregiver — human life is about growth, and change. It is about supporting that growth. It is not about a snapshot in time by science which is not infallible or always right or accurate even if not infallible. It is not condemning a person to never having an opportunity to change and shutting down discussion. Pro life permits others their God given lives and voices. It doesn’t deny these even in the name of some false compassion.

    The fact is that I have changed the thinking of many who were previously if erroneously hardened to accept the evil of the culture of death. Change is only possible, and growth, if one is open to it. I do not think it the role of government to pronounce people failures or to give up on them in their infancy. At least, if that is to be their fate, it seems that government and secular establishments could certainly take a less officious and condescending approach, omit the moral superiority and shaming of parents and families, and admit that they are not all knowing and all righteous and that many times even science gets it completely wrong.

    Let’s hope for peace in bureaocracies and for peace and relief from the propaganda of the cultures of death, starting within the Church first and foremost.

  41. The Masked Chicken says:

    I know that this is an emotional issue for all of the commenters, here. I am glad that we have kept the conversation civil, even though it appears there are disagreements.

    I hope the new hearing allows Charlie to either be moved from England or get the treatment that has been offered. Since the hospital initiated the proceedings, it could mean that they are willing to try the therapy. Again, however, to base the decision on whether or not the treatment reverses brain damage vs. stopping the disease misses the whole point. Parents live with brain-damaged babies all the time. That is not a valid reason for removing a respirator.

    The Chicken

  42. benedetta says:

    Neither here nor in “America” magazine, the advocates for governmental authorities pronouncing death sentences on others in the name of scientific know it all and knowing best for others and usurping parents and for rationed care, some may be interested in taking a look at what happens in real time when a progressive, technologically advanced society undertakes to make such decisions. This book has received widespread secular acclaim for its honest analysis which is also secularly based. I look forward to seeing America magazine review it with sincerity. Some time ago then VP Biden told the Chinese government apparatus as to their approach that “he understood” it and seemed to extend his support and sympathy to it, shockingly. It’s important that the discussion be had here, and not be silenced as it is in that part of the world, in the name of some misguided “progress” which sounds very big brother/condescension “we know best for you”.

    https://smile.amazon.com/gp/product/1786070561/ref=ox_sc_sfl_title_1?ie=UTF8&psc=1&smid=A36IIKTWNUC8VI

  43. capchoirgirl says:

    AnnTherese, I find this statement of yours sort of chilling:

    “But, sometimes “saving” means setting a child up for years or a lifetime of hospitalizations, surgeries, pain, debility, and other forms of suffering– a quality of life we all dread.”

    So, people who have lots of hospitalizations, surgeries, pain, debility and other forms are suffering….that’s a quality of life we all dread? Speak for yourself, please. I’ve had all those things, and still have them, and I’m glad I’ve had them, because it means I’m still alive. There’s a big difference between accepting death, and being prepared for it, and being afraid of pain and illness and debility and seeing death as the more humane option, like GOSH said in their arguments to the courts.

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