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Dad Fights Hospital to Keep Baby on Life Support

Specializes in CCU & CTICU.

From the Guardian: Father fights to stop hospital withdrawing life support for baby son

A father whose son was born with a rare neuromuscular condition will go to the high court tomorrow in an attempt to stop a hospital withdrawing the support that keeps the child alive.

Doctors treating the one-year-old say the boy's quality of life is so poor that it would not be in his best interests to save him. They are reportedly being supported in their action by the baby's mother, who is separated from his father.

The child, known for legal reasons as Baby RB, was born with congenital myasthenic syndrome (CMS), a muscle condition that severely limits movement and the ability to breathe independently. He has been in hospital since birth.

If the hospital succeeds in its application, it will be the first time a British court has gone against the wishes of a parent and ruled that life support can be discontinued or withdrawn from a child who does not have brain damage.

What a hard situation to be in.

From Wikipedia, the free encyclopedia this is treatable

M

I think its important to provide links for sources to comments such as in the previous post. Like most diseases this particular condition probably does lay along a continuum of severity. Whether or not the disease is treatable in the abstract does need to be balanced for quality of life variables.

Having said that I also think that the parents should come to a common agreement about the treatment plan.

This is the great health care system? Why would a court be deciding (or doctors) to take baby off life support? A doctor would NEVER be able to decide in the U.S. even if they had no health insurance and couldnt pay the bill. If one parent wanted to keep the child on , they would be kept on. This is what happens when government runs things.

"this is the first time a court has gone against the wishes of a parent" Its a slippery slope! The flood gates are open!

caroladybelle, BSN, RN

Specializes in Oncology/Haemetology/HIV.

From Wikipedia, the free encyclopedia this is treatable

And we know that everything medical on Wikipedia, is well researched and accurate.

On the other hand, data from the Mayo Clinic indicates that there can be great variation in the treatability of the disorder and that some forms are fatal. It also indicates more serious issues in those that manifest the symptoms of the disorder earlier in life - I would say since birth indicates very early onset.

It also indicates that there are forms that have no drug treatment.

The other problem is the phrase "treatable". Virtually EVERYTHING is treatable. That does not mean curable, nor tolerable, nor maintaining good quality of life. Pancreatic cancer is treatable (but frequently not curable) with surgery/chemo, however frequently those "treatments" make actually risk shortening life, and frequently involving worsening quality of life. Is it worth lengthening one's life by a few days, if those days are marked by nonstop vomiting, being attached to IVs, NG tubes, or feeling acutely ill?

We do not receive the severity of the child's disease, whether it is presynaptic, or synaptic....all we know is when it has onset. That onset in early childhood (at birth) indicates that it is probably more severe, but again we do not know. We also know that child is unable to leave the hospital. As such, we cannot judge. But I would expect that the MDs in this DO have data on the longterm prognosis, and feel that they are better to judge than those of us, especially when relying on Wikipedia as a source of knowledge.

It is also interesting that the parents cannot come to agreement.

Edited by caroladybelle

caroladybelle, BSN, RN

Specializes in Oncology/Haemetology/HIV.

Why would a court be deciding (or doctors) to take baby off life support? A doctor would NEVER be able to decide in the U.S. even if they had no health insurance and couldnt pay the bill. If one parent wanted to keep the child on , they would be kept on. This is what happens when government runs things.

"this is the first time a court has gone against the wishes of a parent" Its a slippery slope! The flood gates are open!

Uhhh, you are incorrect and for that matter, at least 10 years too late.

In 1999, George W. Bush, as governor of the state Texas, signed into law, legislation commonly known as the "Texas Futile Care Law" . This law permits withdrawal of life support, when the MDs of a case, in conjunction with the ethics committee, determines that the care is futile, even if the parents disagree. This has been done in several cases and at least one of the patients was on public assistance, or so is my understanding. The original legislation actually had the backing of some prolife groups as it required a 10 day waiting period in which the parents could try and find another provider of care and transfer their child. They have since withdraw support when it was found that in such cases, most hospitals....even the staunchly prolife ones... routinely refuse to accept such cases after reviewing the data.

I have also been told that Virginia has similar legislation, though I am not as familiar with the cases there.

With all the PR about alledged "death panels", I wonder why little gets said about GWB legislating a more definitive "death panel".

I was not aware of this. How disgusting! I think the government should just stay out of health care. It is murder to kill a baby when the parents dont want them taken off life support and Heaven help those who pull the plug, cause it sure as heck wont be me!

ghillbert, MSN, NP

Specializes in CTICU. Has 20 years experience.

I was not aware of this. How disgusting! I think the government should just stay out of health care. It is murder to kill a baby when the parents dont want them taken off life support and Heaven help those who pull the plug, cause it sure as heck wont be me!

Please try facts in your arguments.

1. "Murder" implies premeditation and malice. I doubt the docs and mom feel the need to "murder" the baby.

2. This case involves the MOTHER wanting to withdraw, as well as the treating physicians. It's hardly the hospital running roughshod over the parents' wishes. Maybe dad can't cope with the idea.

3. If you really feel this is the nefarious "government" being involved in health care, I'm just...surprised. Is being charged with DUI having the "government" involved in your partying? Civilizations have rules, including the use of the courts, to protect the majority.

Thank god there is some remedy for physicians to advocate for their patient rather than cater to people who can't let go of the poor child who can't advocate for himself - dad thinks being in hospital since birth = "good quality of life"?

PS: Do you genuinely think any US insurance company would continue to pay for hospitalization ad infinitum...??

Edited by rn/writer
Removed unhelpful phrase.

Uhhh, you are incorrect and for that matter, at least 10 years too late.

In 1999, George W. Bush, as governor of the state Texas, signed into law, legislation commonly known as the "Texas Futile Care Law" . This law permits withdrawal of life support, when the MDs of a case, in conjunction with the ethics committee, determines that the care is futile, even if the parents disagree. This has been done in several cases and at least one of the patients was on public assistance, or so is my understanding. The original legislation actually had the backing of some prolife groups as it required a 10 day waiting period in which the parents could try and find another provider of care and transfer their child. They have since withdraw support when it was found that in such cases, most hospitals....even the staunchly prolife ones... routinely refuse to accept such cases after reviewing the data.

I have also been told that Virginia has similar legislation, though I am not as familiar with the cases there.

With all the PR about alledged "death panels", I wonder why little gets said about GWB legislating a more definitive "death panel".

Ah, yes, W, the great "respecter" of human life, the great "valuer" of humankind. :jester: Now I can breathe easier.

texas2007, BSN, RN

Specializes in NICU. Has 2 years experience.

I suspect there is much more to this story than is let on. If the child were as the dad claims, why not trach him and g-tube him and send him on his merry way? The fact that the child is still in the hospital at 1 year of age and has not been able to leave speaks volumes.

FWIW, It's disheartening to read that one thinks withdrawing support is "murder". I spend much of my time at work with "chronics". These kids are miserable.. frequent IV sticks, lab draws, bagging/suctioning, narcotic withdrawl, day in/day out in a hospital bed...what kind of life is that. It is NOT! It is very emotionally draining to take care of these children and it is almost a relief to hear when one has passed as they are free of all the **** I had to put them through just to keep them alive. I think most my of co-workers and myself are in agreement that if we ever required such medical care as these kids do, we would have wanted the vent turned off waaaay before it ever got to that point.

Edited by Silverdragon102
Changed to all ****

I suspect there is much more to this story than is let on. If the child were as the dad claims, why not trach him and g-tube him and send him on his merry way? The fact that the child is still in the hospital at 1 year of age and has not been able to leave speaks volumes.

FWIW, It's disheartening to read that one thinks withdrawing support is "murder". I spend much of my time at work with "chronics". These kids are miserable.. frequent IV sticks, lab draws, bagging/suctioning, narcotic withdrawl, day in/day out in a hospital bed...what kind of life is that. It is NOT! It is very emotionally draining to take care of these children and it is almost a relief to hear when one has passed as they are free of all the **** I had to put them through just to keep them alive. I think most my of co-workers and myself are in agreement that if we ever required such medical care as these kids do, we would have wanted the vent turned off waaaay before it ever got to that point.

Why do you continue to work in this area if it is so hard for you? I know it is hard but I wonder if maybe it might be time for a change for you personally? Not trying to tell you what to do, just thinking aloud.

So much of a person's view of sickness is based on one's religious views. Some religions view sickness as God's punishment, working out of one's karma from a previous life, God's will, whatever. Very, very hard to be totally objective when it comes to this topic. I do know that money and quality of life matter, but they are not the whole picture. I have no easy answers, either.

When the elderly in nursing homes keep falling and getting pneumonia and UTI's, the doctors start advocating for not treating them after the first bout or 2. That's what happened with my relative. Doc said let's not treat his UTI and just let him go. I fought that, as I know a UTI can sometimes cause horrible pain. But when the pneumonia came, his daughters decided to let him go. Doc convinced them that CO2 narcosis caused him to not feel the SOB or pain. I wonder.

Granted, his life was only about being completely bedridden, incontinent, dependent, falling, getting tied down, wiggling free, crawling naked on the floor after falling OOB. Oh, it was a terrible scene. Terrible and repeated several times. It was decided to let the bacteria win. Mixed feelings about it on my part.

Edited by Silverdragon102
original quote changed to all **

I was not aware of this. How disgusting! I think the government should just stay out of health care. It is murder to kill a baby when the parents dont want them taken off life support and Heaven help those who pull the plug, cause it sure as heck wont be me!
You are confusing me. You say, it is murder to take a baby off life support when the parents don't want them to be removed. Are you then saying it is not murder to take them off if the parents want them removed? You should be careful about throwing those words "kill" and "murder" around in these situations. Human beings are removed from life support everyday and no one is killing them, no one is murdering them. There is an issue here about removing a child from life support without the consent of both parents. It is a valid issue and needs to be discussed and it is no wonder it is ending up in court. A lot of times these things do end up in court for good reason. But using words like kill and murder turn the discussion into something altogether different. It is not murder to turn off machines and let a death that nature intended to take place. It is not killing someone to refuse treatment and allow nature to take it course.

Why do you continue to work in this area if it is so hard for you? I know it is hard but I wonder if maybe it might be time for a change for you personally? Not trying to tell you what to do, just thinking aloud.

So much of a person's view of sickness is based on one's religious views. Some religions view sickness as God's punishment, working out of one's karma from a previous life, God's will, whatever. Very, very hard to be totally objective when it comes to this topic. I do know that money and quality of life matter, but they are not the whole picture. I have no easy answers, either.

When the elderly in nursing homes keep falling and getting pneumonia and UTI's, the doctors start advocating for not treating them after the first bout or 2. That's what happened with my relative. Doc said let's not treat his UTI and just let him go. I fought that, as I know a UTI can sometimes cause horrible pain. But when the pneumonia came, his daughters decided to let him go. Doc convinced them that CO2 narcosis caused him to not feel the SOB or pain. I wonder.

Granted, his life was only about being completely bedridden, incontinent, dependent, falling, getting tied down, wiggling free, crawling naked on the floor after falling OOB. Oh, it was a terrible scene. Terrible and repeated several times. It was decided to let the bacteria win. Mixed feelings about it on my part.

Yeah, it's not so simple. Quality of life is important, and you don't want loved ones to suffer but at the same time, it's got to be hard to assume you know what they would want when they're not in a position to speak for themselves. My grandfather was in hospice with Parkinson's, and developed aspiration pneumonia. The doctor spoke to him (he was able to speak until the end) and he wanted to be treated. He was bedridden, completely dependent, and by the time he passed away he had been in hospice for a year and a half. I can't imagine living like that- he had a great community of friends who could visit him but mostly he just listened to music. But he was treated for the pneumonia and ended up living another 6 months. His kids might have made another decision if he hadn't been able to communicate his wishes.

I feel for the parents, for the child, and while we only have limited details, I agree that the fact that the child has been in the hospital for a year paints a grim picture. How awful for the father to find the decision out of his hands, how awful for the mother to see her baby continue to suffer.

texas2007, BSN, RN

Specializes in NICU. Has 2 years experience.

Why do you continue to work in this area if it is so hard for you? I know it is hard but I wonder if maybe it might be time for a change for you personally? Not trying to tell you what to do, just thinking aloud.

It really has nothing to do with the area I am in; when any patient is on your unit continuously for up to 1.5 years, it's easy to feel morally conflicted at times, no? Luckily most of our babies do get to go home, and do have a good quality of life. The babies I was describing previously are just a small yet unforgetable segment of our population.

interleukin

Specializes in Mixed Level-1 ICU. Has 14 years experience.

I was not aware of this. How disgusting! I think the government should just stay out of health care. It is murder to kill a baby when the parents dont want them taken off life support and Heaven help those who pull the plug, cause it sure as heck wont be me!

Sounds like you've been poisoned by right-wing radio entertainers who will say anything--facts/reason be damned--if it'll get your attention and increase ratings.

NRSKarenRN, BSN, RN

Specializes in Vents, Telemetry, Home Care, Home infusion. Has 43 years experience.

from mda. scroll 1/2 down page

congenital myasthenic syndrome (cms)

[color=#990033]

[color=#990033]cms results from genetic flaws at the neuromuscular junction-where the nerve cell meets the muscle cell. the type of cms depends on where the defective gene lies: (a) in the nerve cell-presynaptic cms; (b) the muscle cell-postsynaptic cms; or © the space in between-synaptic cms.

[color=#990033]postsynaptic cms (ach receptor deficiency, fast-channel cms)

cause: ach receptors are missing or don't stay open long enough.

symptoms: vary from mild to severe. in infants, may cause severe weakness, feeding and respiratory problems, and delayed motor milestones (sitting, crawling and walking). childhood and adult-onset cases often cause ptosis and fatigue, but usually don't interfere with daily living.

drug treatment: cholinesterase inhibitors and 3,4-dap

[color=#990033]

ShayRN

Specializes in Corrections, Cardiac, Hospice. Has 18 years experience.

I would like to know many more details. Is the dad involved in the day to day care of this child? Has he been there to emotionally support the mom throughout the whole process? Has he been at the bedside physically holding the baby and watching the medical procedures being preformed? There is a HUGE difference in how much weight his opinion should carry, based on the answers to those questions. Is he a daddy or a sperm donor?

Sounds like you've been poisoned by right-wing radio entertainers who will say anything--facts/reason be damned--if it'll get your attention and increase ratings.

Careful. Just because YOU disagree with the opinions expressed, do not mean that these folks are actually "wrong". Those "on the right" can cite plenty of examples of "facts/reason be damned" on the behavior of the left. Then all you have left is an immature mud-slinging contest.

Cindy-san

Specializes in CCU & CTICU.

This is the great health care system? Why would a court be deciding (or doctors) to take baby off life support? A doctor would NEVER be able to decide in the U.S. even if they had no health insurance and couldnt pay the bill. If one parent wanted to keep the child on , they would be kept on. This is what happens when government runs things.

I've had doctors decide care was futile and withdraw treatment without familial consent. Doesn't happen very often, but it does. And like this story, it had nothing to do with the healthcare system or paying the bills.

It is not murder to turn off machines and let a death that nature intended to take place. It is not killing someone to refuse treatment and allow nature to take it course.

So much this. :yeah:

MedSurgeMess

Specializes in Med/Surg, ICU, educator.

You are confusing me. You say, it is murder to take a baby off life support when the parents don't want them to be removed. Are you then saying it is not murder to take them off if the parents want them removed? You should be careful about throwing those words "kill" and "murder" around in these situations. Human beings are removed from life support everyday and no one is killing them, no one is murdering them. There is an issue here about removing a child from life support without the consent of both parents. It is a valid issue and needs to be discussed and it is no wonder it is ending up in court. A lot of times these things do end up in court for good reason. But using words like kill and murder turn the discussion into something altogether different. It is not murder to turn off machines and let a death that nature intended to take place. It is not killing someone to refuse treatment and allow nature to take it course.

While I agree that both parents need to be heard, I wonder, since hearing that mom and dad are long separated, what are the motivations of the parents. It sounds like medically futile care, and maybe dad is trying to keep some control--either out of anger or powerlessness. If doctors are saying the child is beyond any recovery, then maybe some hard decisions must be made. I know it sounds heartless, but realistically, medically futile care = no positive outcome. I can't even begin to imagine the sadness that those parents are feeling on a daily basis....my heart goes out to anyone in that situation.

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