Charlie Gard: Terminally ill baby probably won't be allowed to spend final days at home, judge says

Terminally-ill baby Charlie Gard is unlikely to be able to spend his final days at home with his parents, a High Court judge has said.

 

Doctors caring for the 11-month-old, who suffers from a rare genetic disorder, said they wanted to fulfil the "last desire" of his parents but there were practical difficulties in providing the intensive care the baby needs outside a hospital.

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Mr Justice Francis said he will make a decision about where Charlie will spend his last days on Wednesday but said the chances of him being able to go home were "small".

It comes after Charlie's parents, Chris Gard and Connie Yates, both in their 30s from Bedfont, west London, abandoned attempts to persuade the judge to let him travel to America for experimental treatment.

 

But just hours after dropping their lengthy legal battle, they became embroiled in a dispute with doctors at Great Ormond Street Hospital (GOSH), where he is currently being cared for, over the circumstances of his death.

 

Barrister Grant Armstrong, who leads the couple's legal team, told the judge hospital bosses were placing obstacles in Charlie's parents' way.

"The parents wish for a few days of tranquillity outside of a hospital setting," Mr Armstrong said. "The parents had hoped that Great Ormond Street would work with them."

 

But GOSH doctors said they believed moving Charlie to a hospice was the best option.

 

GOSH’s barrister Katie Gollop QC said staff were not creating "obstacles" and that staff had "moved heaven and earth" for Charlie.

 

"The care plan must be safe, it must spare Charlie all pain and protect his dignity," she said.

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"At the same time, the plan must honour his parents' wishes about two matters in particular, namely the time and place of his passing."

She said finalising an end-of-life care plan was the "most delicate and difficult task".

 

"Charlie's parents want him to be with them and ventilated at home for several days before receiving palliative care," she said. "Above all, Great Ormond Street wants to fulfil that last wish.”

 

But she said the invasive ventilation that Charlie required was only able to be provided in a hospital setting.

 

"Those resources cannot be provided by Great Ormond Street to Charlie at his parents' home," she said.

 

"Great Ormond Street is aware that there are other practical problems, one being that the ventilator does not fit through the front door.”

 

13 comments

What a shocking thing this is;  so very, very sad.  There are no winners in any of  this and the stress for all concerned must be unbearable.

Lately I have been hearing/reading about genetic problems parents are only  finding out about  after their children are born.

Surely, in this day and age before couples  embark on parenthood would it not make sense to go and get testing done?  So much heartache could possibly be avoided.

I remember watching old movies from the US where people were talking about getting blood tests before they were married.

 

 

That poor little baby. Technically he is already dead. He can't see, hear or feed himself and doesn't react to any stimulation. There is no hope for his recovery, so why can't the parents have him with them in his final days. Sometime the legal system play God and are not showing any compassion. 

THIS whole case is so tragic,      i cant imagine it,    when my friends grandchild NOAH was so sick a few weeks ago,    i know what his family went through,     i ant imagine what this must be doing to those parents,    who only want the best for that poor baby,   its not a decision any parent should have to make,     i just hope whatever they decide is for the best for CHARLIE,          god speed,  little one,    

This case is very sad and tragic this poor little child and I feel so much for the parents BUT to take this little mite home would cause him much suffering because he would not be able to be hooked up to the machines and would suffer -- I really think the parents need to consider the Baby and his comfort b4 anything else.

 

I am with Radish on what was stated -- parents need to have many tests to see if there is any chance of a Child being born with some complaint that is going to make their lives hell -- and if so then do the right thing and do not have a Child.

So many people have Children out of selfishness when they know there is every chance that they could be born with some dreadful complaint.

I understand the latest news is the child will be taken to a hospice.  Prolonging the life of this little one who is this ill and has no quality of life is fruitless and I think the court has made the right decision.

I totally understand (as best I can anyway) that the parents want to hang on as long as possible to their child but in its best interests it is time to say goodbye.

In the end the parents agreed to pull the plug on this little mite , as they had been given advise by the US specialist who had been granted access , That it was too late to intervene. 

If only buricrasy had not got involved and he was allowed to fly to the US earlier he might have survived .

What a tragedy, poor little boy, my heart goes out to the parents, as the deadly gene was inherited, I hope they can safely have another child.

 

Remember in the old American movies how couples had to have a blood test before they could get married?  Curious if it still applies, I found this.

Are blood tests still required before marriage?

A handful of states still require blood tests for couples planning to marry. Most do not. (For information on which states require them, see Chart: State Marriage License and Blood Test Requirements.

Premarital blood tests check for venereal disease or rubella. The tests may also disclose the presence of genetic disorders such as sickle-cell anemia or Tay-Sachs disease. You will not be tested for HIV, but in some states, the person who tests you will provide you with information about HIV and AIDS. In most states, blood tests can be waived for people over 50 and for other reasons, including pregnancy or sterility.

If either partner tests positive for a venereal disease, what happens depends on the state where you are marrying. Some states may refuse to issue you a marriage license. Other states may allow you to marry as long as you both know that the disease is present.

http://www.nolo.com/legal-encyclopedia/marriage-requirements-licenses-ceremonies-faq.html#answer-1740483

Toot, thanks finding that.  I had a vague memory of that, as you said, from old movies.

Maybe it is time more thought is given before embaking on creating more life.  So many things can go wrong especially with all the environmental factors that were probably not around in earlier years.  The foods we eat, the air we breathe, chemicals etc...who knows how all this is affecting our DNA in addition to inherited problems which many of us would not even know about.

 

Agree Rads, we see so many babies and little children suffering terrible inherited illnesses, it does make you wonder if both parents could be somehow checked out first, would it make a difference.

Your article is detailed, thanks to it I solved the problem I am entangled. I will regularly follow your writers and visit this site daily.

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gawd...another spammer has turned up!!

why are they not deleted quicker??

'Our beautiful little boy has gone, we are so proud of you Charlie.'

DM: Little Charlie Gard's parents announce that their brave warrior whose plight touched the world has finally died after battling devastating genetic illness he fought for so long. BBC: Charlie Gard has died, a family spokesman has confirmed. The 11-month-old was moved to a hospice following a High Court ruling.

Sources: The Daily Mail, BBC.

RIP Charlie.

VERY VERY SAD for all concerned,    but he is free from pain now,    R,I,P, CHARLIE,                                  YES i believe everyone should be blood tested before marriage,     would save a lot of hart ache later in life,   

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