Charlie Gard

[Lavender111]

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but that at the end of the day multiple doctors have confirmed that the child is just in pain & that care should be withdrawn.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?

[Lavender111]

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 Care was withdrawn after she was declared brain dead.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.

[guest52816]

I read today that the court decided to have Charlie moved to hospice, where he will die. His parents had wanted to take him home to die.

It is a gut-wrenching story and situation for all involved. I can't imagine how his parents feel. As parents, it is their job to protect Charlie, and do all they can for him. Which in this case, isn't much given his medical condition.

So, a neutral, third-party (the court) must get involved to ensure everything is done to prevent Charlie from suffering. But his parents suffering will go on for years, I am sure. They will most likely think of things they should have done, when there was nothing to be done.

I hope that child's soul finds a peaceful place to rest.

[TC3200]

Why didn't they just listen to the trained medical professionals who told them the truth back in October. July has been like watching two people who've lost their marbles. They act like they are on autopilot or something, like they never listened to anything their medical team surely, by now, has told and retold them a dozen and one times.

I can't help wondering if Connie Yates (in particular) keeps trying to prolong the inevitable in order to avoid having to face the future. Her relationship with Chris Gard may end after Charlie's death. I hope they both have a good support system, but I worry most about her. She already looks like walking skeleton and the biggest crash hasn't even happened yet. If they break up after this, she goes back to ... What? Motherhood and a houseful of children with some other man? Single again, trying to reenter the dating scene? Throw herself into her career (she doesn't appear to have one, because "carer" seems to be generally an unpaid caregiver for immediate family or disabled child, and receives a government allowance for the only the duration of that gig.) See what I mean? Blasting your personal life all over the Internet, and this time, literally all over the WORLD, no privacy. Hell on Earth to me. But maybe it doesn't bother the younger generation so much. I just think some things ought to be private, not social media fodder.

[Phil-on-a-bike]

Horrifying slow-motion train-wreck of a case, with no upside whatsoever.

Random thoughts, in no particular order:

The expert opinion of top clinicians at one of the leading children's hospitals on the planet has been flat-out ignored, simply because it wasn't what the patient's family wanted to hear.

(I hate to say this, but... is it easier to dismiss expert medical advice out-of-hand when said medical advice and the exhaustive investigations which underpin it didn't cost you a penny? Why not make the system jump through hoops... it's all free, isn't it? I feel a traitor to my socialist roots just entertaining that notion!)

Professor Hirano's opinion - given without examination of the patient or the full clinical details - was foolishly and prematurely trumpeted as a miracle cure, or at least, a potential miracle cure.

The plain facts - that Prof Hirano's work was not directly applicable to Charlie's condition, but to similar conditions - that it never offerred any hope for relief of Charlie's myriad of associated problems - that Hirano himself described the treatment as very unlikely to offer any improvement - and that any possible benefits were entirely conjectural - were glossed over as if they were petty inconveniences.

The unwarranted weight given to Prof Hirano's opinion by the family and the media painted a crass and insulting picture of GOSH as some kind of local-yokel cottage hospital, it's clinicians waiting in awe on the word of that there real, letters-after-his-name Doctor from the Big City.

GOSH had offerred to consult with Prof Hirano early in Charlie's treatment - an offer that, for reasons known only to himself - Hirano had not acted upon.

He didn't actually review the case until the court said, basically: "so go ask him already."

That was presented in the media as if the family has had to fight in court to get the consultation.

The time it took to resolve that has been seized upon by Charlie's family like a dog with a bone.

Because we can fix RR2MB mutation if we catch it a month or two sooner, right?

To be hard-nosed about this for a moment - what we've heard from Charlie's parents throughout this case has been utterly delusional.

It has been hard to call them on this, because of the sensitivity of the issue, and because they've made their case in a calm and dignified manner.

But make no mistake - well-presented wingnuttery is still wingnuttery.

As for the bloody Vatican - if there's any substantive basis in what you're peddling, then just pray harder, okay? Be sure and let me know how that goes.

PS: Hppy, I had to LOL long and hard at your 'objective evidence of pain' comment.

"Nurse, I need analgesia... I'm in agony here!"

"I have no objective evidence for that."

"But... but I just told you!"

"That's subjective and you know it. Nice try, pal."

[meanmaryjean, DNP, RN]

Horrifying slow-motion train-wreck of a case, with no upside whatsoever.

Random thoughts, in no particular order:

The expert opinion of top clinicians at one of the leading children's hospitals on the planet has been flat-out ignored, simply because it wasn't what the patient's family wanted to hear.

(I hate to say this, but... is it easier to dismiss expert medical advice out-of-hand when said medical advice and the exhaustive investigations which underpin it didn't cost you a penny? Why not make the system jump through hoops... it's all free, isn't it? I feel a traitor to my socialist roots just entertaining that notion!)

Professor Hirano's opinion - given without examination of the patient or the full clinical details - was foolishly and prematurely trumpeted as a miracle cure, or at least, a potential miracle cure.

The plain facts - that Prof Hirano's work was not directly applicable to Charlie's condition, but to similar conditions - that it never offerred any hope for relief of Charlie's myriad of associated problems - that Hirano himself described the treatment as very unlikely to offer any improvement - and that any possible benefits were entirely conjectural - were glossed over as if they were petty inconveniences.

The unwarranted weight given to Prof Hirano's opinion by the family and the media painted a crass and insulting picture of GOSH as some kind of local-yokel cottage hospital, it's clinicians waiting in awe on the word of that there real, letters-after-his-name Doctor from the Big City.

GOSH had offerred to consult with Prof Hirano early in Charlie's treatment - an offer that, for reasons known only to himself - Hirano had not acted upon.

He didn't actually review the case until the court said, basically: "so go ask him already."

That was presented in the media as if the family has had to fight in court to get the consultation.

The time it took to resolve that has been seized upon by Charlie's family like a dog with a bone.

Because we can fix RR2MB mutation if we catch it a month or two sooner, right?

To be hard-nosed about this for a moment - what we've heard from Charlie's parents throughout this case has been utterly delusional.

It has been hard to call them on this, because of the sensitivity of the issue, and because they've made their case in a calm and dignified manner.

But make no mistake - well-presented wingnuttery is still wingnuttery.

As for the bloody Vatican - if there's any substantive basis in what you're peddling, then just pray harder, okay? Be sure and let me know how that goes.

PS: Hppy, I had to LOL long and hard at your 'objective evidence of pain' comment.

"Nurse, I need analgesia... I'm in agony here!"

"I have no objective evidence for that."

"But... but I just told you!"

"That's subjective and you know it. Nice try, pal."

*Slow clap to the whole post- well said!

[RNGummy40]

The parents actions to prolong their child's life are normal. It would also be normal for parents to say, "Okay, let him go." The parents are in a state of loss and the irregular cycle of loss is a painful process.

As for the decision to prolong the child's life and find a cure. Is it wrong? I find myself on the scales of justice and feel my geminian side clinging to both perspectives. On one hand, the cost and quality of life for the family, the hospital, and the baby need to be considered. At this current time, the decision to treat does affect other patients. Just by looking at the supply and demand factors, it is costly to perform an experimental treatment, and I wonder how many other lives are impacted by that decision. Just the ethical implications of performing the experimental treatment are significant, and would impact the babies current situation, and end of life, especially if a cure is not the final result.

As for why the parents would want a cure, who wouldn't? When looking at our healthcare history, there have been many cases of conditions which were thought to be untreatable. Doctors would give their opinions, and thankfully certain people did not just accept what they were told. Whether the lack of acceptance was related to critical thinking, hope, denial, oppositional defiant disorder, or just dumb luck, people around the world are thankful, even if they are ignorant about how such treatments came to be. At the very least, the public is more aware of this devastating genetic disorder, and hopefully current and future generations will be blessed, inspired, and passionate to finding a cure. My prayers are with his family, and all families tied to this terrible genetic disorder.

[Kooky Korky, BSN, RN]

The parents decided not to treat him. The debate is over (at least for this case).

The reason for their decision, though, is that too much time has gone by. They now seem to believe that the experimental treatment they wanted to try would not help because too much time was wasted on legal battling.

[Kooky Korky, BSN, RN]

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.

Kids who need rice have nothing to do with Charlie's case. There are so many billions and trillions of dollars in this greedy world that no one needs to choose rice vs. Charlie.

Governments want people hungry. Kids have been starving in Africa, India, Appalachia, inner cities, and elsewhere ever since I can remember - fifty years, at least. The hunger could have been fixed long ago - if governments wanted it fixed. Starvation and disease, lack of clean water are means to control the victims of these things.

North Vietnamese were told that Jesus and the Blessed Virgin were in South Vietnam and they needed to get there fast so they could see them and live with them. A lot of people migrated south. So there came to be many Viet Cong in South Vietnam.

Same kind of thing - we will go where the food and water are, the medical care, the housing, the hope. Desperate people migrated to California for plenty of work and high wages during the Dust Bowl days. They were largely sharecroppers whose crops failed. They were literally kicked into the dirt, they were desperate for work, for food. So they went where they were told they could find it. It was a real winner for the big growers, who now had an over abundance of workers for just a certain amount of work. And hungry people agreed to work for less than their peers, thus driving down wages. Dog eat dog. Greed.

So, there's plenty of rice and plenty to try to help the Charlie's of the world. Just that in his case there simply really was no cure. Let the little angel rest in God's arms and enjoy his new home in Heaven. And may God bless and help his parents.

[guest52816]

Alas, Charlie has died.

Why didn't his parents listen to the experts? Because they were his parents, and acted accordingly. While I don't condone much of their online fundraising behavior, I can't fault them for wanting to save their child. It is what any normal human being would want to do.

[hppygr8ful, ASN, RN, EMT-I]

PS: Hppy, I had to LOL long and hard at your 'objective evidence of pain' comment.

"Nurse, I need analgesia... I'm in agony here!"

"I have no objective evidence for that."

"But... but I just told you!"

"That's subjective and you know it. Nice try, pal."

LOL but in the absence of subjective evidence we have no choice but to go with the objective.

Hppy

[KelRN215, BSN, RN]

I think we often have this idea in the US that because we can intervene, we should. This baby may very well have gone home trached, vented, with a G-tube and/or on TPN if he was born here. But is that really the ethical way to proceed?

I met a child last week who came from another country with an undiagnosed neurodegenerative disease. He did have a G-tube placed in his home country but was severely malnourished (almost 4 years old and 7 kg) upon admission here. The parents had, in their country of origin, been told that the child would not have a long life and had accepted that. But as soon as he got admitted in the US, we had to consult EVERYONE. Neurology, Genetics, Metabolism, Pulmonary, GI, everyone wants to do all these tests that are not going to change the child's prognosis (and that the parents have said they are uninterested in pursuing). If the child stays longer than the few months they originally intended, I would be willing to bet that these medical teams convince the parents to pursue this testing and there will always be one more test to do and one more medication or treatment to try. All at the expense of the child's quality of life and none of it will change his outcome.

[cardiacfreak, ADN]

I think we often have this idea in the US that because we can intervene, we should. This baby may very well have gone home trached, vented, with a G-tube and/or on TPN if he was born here. But is that really the ethical way to proceed?

I met a child last week who came from another country with an undiagnosed neurodegenerative disease. He did have a G-tube placed in his home country but was severely malnourished (almost 4 years old and 7 kg) upon admission here. The parents had, in their country of origin, been told that the child would not have a long life and had accepted that. But as soon as he got admitted in the US, we had to consult EVERYONE. Neurology, Genetics, Metabolism, Pulmonary, GI, everyone wants to do all these tests that are not going to change the child's prognosis (and that the parents have said they are uninterested in pursuing). If the child stays longer than the few months they originally intended, I would be willing to bet that these medical teams convince the parents to pursue this testing and there will always be one more test to do and one more medication or treatment to try. All at the expense of the child's quality of life and none of it will change his outcome.

And THIS is why I now do hospice. QUALITY OF LIFE, NOT QUANTITY . I recently had a patient on service for only 4 days, she battled and beat breast cancer in late 90's. She battled and beat colon cancer in 2010, and recently diagnosed with AML. She didn't want to go through treatment again, she just wanted to be at peace, painfree, and surrounded by her loving family. We kept her comfortable and painfree, her bed was in the middle of the family room and she was surrounded by her kids ,husband and grandkids when she let out her last breath.

Her family said she was a wonder woman, the grandson brought me a wonder woman T-shirt and we put it on her.