Charlie Gard's parents end fight over treatment for their terminally ill son

[DonViejo]

Source: The Washington Post



By Cleve R. Wootson Jr. July 24 at 9:36 AM

Charlie Gard's parents have decided to end their legal fight over the treatment of the terminally ill child, the BBC reported.

The 11-month-old has mitochondrial DNA depletion syndrome, a rare genetic condition that has robbed him of the ability to see, hear, move or breathe on his own. He’s being treated at Great Ormond Street Hospital, alive only because a machine is helping him breathe. His doctors have concluded that nothing more can be done for him and he should be taken off life support. But his parents have been engaged in a court battle to let him undergo an experimental treatment in the United States that they say could help.

So far, other courts have sided with Charlie’s doctors, who say the treatment is a fruitless endeavor that has not been tested on someone with Charlie’s specific condition and that it will only cause the baby more pain.

This post will be updated.

Read more: https://www.washingtonpost.com/news/worldviews/wp/2017/07/24/charlie-gards-parents-end-fight-over-treatment-for-their-terminally-ill-son

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UPDATE:

The Latest: Charlie Gard’s parents say damage irreversible

LONDON (AP) — The Latest on the legal battle over critically ill baby Charlie Gard (all times local):

2:45 p.m.

A lawyer for the parents of critically ill Charlie Gard says the window during which the baby could have been helped by experimental treatment has closed.

Grant Armstrong says it is “worthy of a Greek tragedy” that Charlie’s parents must withdraw their appeal, just as they were about to present new evidence to a court.

He says delays in treating Charlie mean his condition is now so poor that treatment will not help. He says tests show that the baby has irreversible muscular damage.

Armstrong says the 11-month-old’s devastated parents now “wish to spend the maximum amount of time they have left with Charlie.” He says discussions will be held in private about when Charlie’s life-support will be switched off.

He says the parents “wish to treasure their remaining time with Charlie, however short that may be.”

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https://apnews.com/9d6f69b580b64f0490577fe8e2eac86c?utm_campaign=SocialFlow&utm_source=Twitter&utm_medium=AP

[erpowers]

1. The Right Decision

This is the right decision. This little boy is terminally ill. Beyond that he cannot hear, see, or move, and he is being kept alive by a machine. I know the parents love this little boy, but this is no way for anyone to live. The doctors have said there is nothing that can be done to make this young boy better. What would be the point of keeping him alive on a machine for a few months? I know this will be hard for his parents, but this is the right decision.

[obamanut2012]

2. Treatment would have never helped

So, the backhanded slap at GOSH is pretty appalling.

Am glad little Charlie will have peace and be painfree now.

[B2G]

7. Says you, but Dr Hirano disagrees.

Had they been allowed to start treatment back in January, the outcome may have been far different.

[Boomer]

8. No one promised a cure

No treatment was going to reverse the genetic damage. The only possible "different outcome" was to keep this child alive in a tomb of its own body. I'm beyond understanding how any parents could wish that fate on their child.

[VermontKevin]

12. The Dr. who has financial ties to the "cure" he was promoting?

From GOSH's statement:

“It was, therefore, with increasing surprise and disappointment that the hospital listened to the Professor’s fresh evidence to the Court.

“On 13 July he stated that not only had he not visited the hospital to examine Charlie but in addition, he had not read Charlie’s contemporaneous medical records or viewed Charlie’s brain imaging or read all of the second opinions about Charlie’s condition (obtained from experts all of whom had taken the opportunity to examine him and consider his records) or even read the Judge’s decision made on 11 April.

“Further, GOSH was concerned to hear the Professor state, for the first time, whilst in the witness box, that he retains a financial interest in some of the NBT compounds he proposed prescribing for Charlie. “Devastatingly, the information obtained since 13 July gives no cause for optimism.

[obamanut2012]

14. Nope, you are totally and completely wrong

You do not know more than GOSH.

[Sunlei]

3. heart goes out to these parents.still if real test TXs, stem cells/vaccine/DNA augment-DEMAND IT.

no harm in trying, everything to save their baby.

[obamanut2012]

4. Except nothing will save or help their son

Literally nothing.

[Sunlei]

5. How do you know? I'd demand everything!

[VermontKevin]

13. I wouldn't allow my child to be used for experiments. But that's just me.

[obamanut2012]

15. Because science

Charlie has rights, and thank goodness GOSH and the ethics board and courts insisted on them.

[Sunlei]

16. and if the parents demanded euthanasia when he was born? or no vent or feeding or hydration?

[NickB79]

21. How does your argument differ from Terry Schiavo's case?

Because there appears to be little difference.

[Sunlei]

23. I think the parents should have been allowed to try the TX or the religious route. To late now.

[mucifer]

28. Parents can make certain choices. They can't choose euthanasia in most states . But,

they can choose no vent, no tube feeding and only pleasure feeds (which means whatever the child takes by mouth.)

If the prognosis is very grim, some parents make that choice. Even withholding all treatments these babies can live weeks being held a lot and eating like a bird from a small syringe in their parents loving arms.

Who knows what the right choices are. But, this is an option that many doctors do not explain to parents. Many doctors say "the next step is..." instead of "these are your choices. Let's discuss options."

[Boomer]

9. Death is not the greatest harm

Keeping a baby alive when it has no quality of life is a great deal of harm. It's impossibly cruel.

[Sunlei]

10. I know, especially if the baby is in pain. there is anesthetic, nerve blocks. IMO, if the parents

want to bring their baby to the pope, bring him to Fantamias water and pray for a miracle..they should be allowed to try everything.

[obamanut2012]

17. They do not own their baby -- their rights do not supercede his

Good lord, you want the baby on anesthetic for all of his short life?

UGH.

[Sunlei]

18. I hope hes been on constant anesthetic.

[NickB79]

20. There is in fact a huge amount of harm in trying

Because even the doctor proposing the treatment has stated it will not cure him, only extend his life. And if the child is already suffering, an extra few months only prolongs the pain.

These treatments were not to help the child; they were to help a couple who couldn't come to grasp with the fact they had to let their incurable child die. That is why the hospital intervened. They were an impartial party acting on behalf of the child, and recognized that parents often let their love of their child override what the logical part of their brain is telling them.

[Justice]

6. Such a sad, heartbreaking situation all around

[hamsterjill]

25. +1

Tears for all involved.

[Hortensis]

11. Heartbreaking. There are many Charlies out there,

dealt tragic, brief lives by genetics. And their parents, whose happiness becomes something very different.

[keithbvadu2]

19. Send one of our evangelist healers over there to heal him

[NCDem777]

22. I like how conservatives got involved in the fight over a BRITISH baby

but don't care about disabled AMERICANS. Senators went as far as to offer this kid asylum but won't speak to disabled AMERICANS at home.

Conservatives on disabled Americans afraid of Medicaid cuts: Welp we all gotta die sometime. Kek

(Actual comment disability groups have been receiving btw)

Conservatives on Charlie Gard: Well we GOTTA save the British baby!

[leftyladyfrommo]

24. It is so painful so to lose a child.

I can understand theur wanting to hang on. They were caught between the devil and the sea.

But sometimes you have to forget about yourself and do what is best for the child. It is so awful when a baby has no chance if surviving. I feel so sorry for those parents. And for that child.

[Still In Wisconsin]

26. God's peace to his parents- it is hell on earth to have to bury a child.

My wife and I buried our first born, so I speak from experience. Pass gently, little one.

[ADX]

27. My heartfelt thoughts and prayers are with Charlie and his parents...