Baby Joseph Maraachli ("Baby Joseph") has been transferred to the Cardinal Glennon Hospital in St. Louis where he presumably will receive a tracheostomy (aka tracheotomy) that will possibly allow him to breath on his own until he dies from his underlying disease. The case has gotten international attention, as the issues raised go well beyond the usual arguments over health care financing. This poll is not about health care financing. The simple question is whether based on what you have read or know about Baby Joseph's condition, should he get a tracheostomy on the prospect that it may allow him to breath on his own, regardless of how short that time might be. A Wikipedia link is provided for reference: http://en.wikipedia.org/wiki/Joseph_Maraachli_case

John

Edit: Let me try to clarify my question. It is not a question of whether from a medical practice standpoint Joseph should get a tracheostomy. This forum is not for the practice of medicine. The question assumes that tracheostomy is a legitimate palliative alternative and asks should the parents' decision with respect to it be respected.

 

I will stick my neck out here & say no. This is based on having spent 22years looking after my son who is disabled with a disease called Tuberoussclorosis (calcium deposits through his brain & hereditry) its like looking after a baby for 22yrs. He doesnt comunicate has to be fed & not toilet trained & has breathing problems & fits. We had to make a desicion some yearsago as to wheather he would have a non resucitation order (very hard decision to make & sign the paper work) He is still going but is in care as we could nolonger look after him. Sometimes hard decisions have to be made & loved ones let go. To me quality of life does eventualy come into the equasion. And yes we do love him.

 

You are to commended for keeping your family together,you have
made a choice.I would think your wife is a loveing careing person.
Unless you have met such a person that is part of life and keeping
the family together.I would think that she wants to keep the family
together,most people could not understand that.You have to have
an experience with such a loving person that really defines what
love of family really means. That a question that belongs to the
family,a family in the true sense of what family is.Not what is preceived
by advise from others,there is no greater calling than being a true
care giver,she care the same for her son as she does for you.I would keep
the union in place,loving care givers will have un asked for blessing a waiting....

 

No. I've been hearing about this for quite awhile and it does upset me. This procedure is entirely for his parents selfish sake and not for him. It is not in the best interest of the baby and should not be allowed. This poor child should have been allowed to die weeks ago.

Parents like these ... you know, I better stop. Let's just say its crazy that you need to pass a test to get a driver's license, but anyone, any forking idjiot, can have a child.

Not that the drivers test is too hard. It's obviously a give away, but at least they go through the motions..

 

We don't want to be God.

 

What if we saw Stephen Hawking's disease while he was a fetus in the womb and decided to abort him? The poor guy cant talk or move. He is almost a human vegetable. Yea right. He can do things in his brain we can't do with 5 arms and 20 languages.

 

What if we saw Stephen Hawking's disease while he was a fetus in the womb and decided to abort him? The poor guy cant talk or move. He is almost a human vegetable. Yea right. He can do things in his brain we can't do with 5 arms and 20 languages.

Then he is not a vegetable. The term has a specific meaning, mostly dealing with being brain dead and not having any significant brain wave activity. I don't think that describes Dr. Hawking.

By keeping people alive who would die otherwise but have no say in the matter, is this not playing God? People talk about it, but forcing an individual to suffer to make you feel good about yourself is evil in my book.

My heart goes out to the parents. From what little I know the baby isn't really suffering, but are we really doing him a favor by extending a doomed existance? If there was even the remotest possibility to cure him that would be different, but that is not what is happening as I understand it.

If a person can speak for themselves, and want to continue on in spite of pain or suffering, then I would wish them well. I wonder how many cases are basically like this are forced to have the machines turned off against their will.

 

The baby is going to die. The question is how and where. As presented in the news, the hospital spokesperson in Canada said he was in a permanent vegetative state and then added that a tracheostomy couldn't be done, because it would cause the baby pain. Perception of pain is one sign that goes against a permanent vegetative state. The video taken shortly after his admission certainly shows a child who is responsive. There is also a flap in Canada over the parents' wish to allow the child die at home, regardless of how he dies, and the hospital insisting he die in the hospital.

Cardinal Glennon Hospital in St. Louis apparently disagrees with the Canadian hospital on both accounts. A tracheostomy can be done on a person who is fully conscious with minimal pain. Just a local anesthetic can reduce that to almost nothing. If the procedure allows him to breath on his own for even a short time, that is probably a better death than the agony of suffocation. As for allowing him to die at home, I simply cannot understand any argument in this case that would go against allowing that, nor has the Canadian hospital put forth any rationale behind its decision.

The staff at Cardinal Glennon is quite experienced in dealing with disabled children, children with incurable diseases, and with end-of-life decisions. It is a blessing that he was allowed to go there. Ultimately, we may know whether the tracheostomy allows him to breath on his own and die with family. I personally hope he is allowed to die at home as his parents wish.

As for the point some people have made about medical decisions for individuals unable to make them for themselves, every state in the US has a set of priorities for making such decisions established. For unmarried, it is usually in the order of parents, children, siblings, etc. If married the spouse generally has first priority -- there are certainly exceptions to that. The order does vary by state and for different situations (e,g, the order of priority for organ donation, autopsy approval -- if required, and removal of life support may be different). In no place does the state have priority over a first degree relative or spouse. In light of problems created by modern technology and conflicts between the clearly expressed wishes of the individual and his successors, the US has what is called Advanced Directives (aka Living Will). If you don't have one and have an opinion on the matter, you should get one. At my age, I have a copy in my wallet, in the car, posted prominently in the house, with my financial records, and in my safety deposit box. I don't want there to be any question about how I feel, even if some relative would like to see me suffer.

John

 

I agree, it isn't easy. Even a living will can be ignored sometimes. It basically happened with my Mom, but I place no blame or judgement. My Dad was a wreck at the time, for that matter so was I. She was conscious to the end, and aware what was happening (and heavily medicated), we all had a chance to say goodbye.

Bureaucrats make lousy bosses. I don't know enough about the case to have an opinion, but even if I did I don't feel qualified to stick my nose into these poor peoples business.

 

You don't have all the informtion,did the court order the baby to
the hospital.The parents, its sounds like they had the baby at
home.Did they decide for life and death reasons to tranfer baby to
hospital.Assigning the hospital an opinion for what the best for the
child.Parents,hospital,courts is always a difficult thing to work with.
So do we know the process this come to the public attention that
adds more to the Issue.The baby should not die in pain.who decided
the baby is in pain,do you judge this by crying.Privacy issues,you will
never know both sides.The parents can make public statement,no one
else.Is there more information.You don't live or die by a poll.

P.S. John I read your post again,you covered In your way most of the Issues that would make this post mute.

 

I don't know enough about the case to have an opinion, but even if I did I don't feel qualified to stick my nose into these poor peoples business.

That is the point and presents quite a quandary. The parents have made their wishes known. What business is it of the Canadian government to interfere? Patient confidentiality is important and must be preserved. But it should not be used as a shield to protect the hospital from public review of its actions. While its decision(s) were upheld in part by a court,* there is little evidence of mercy or compassion. Citizens in a free society not only have the right, but I believe the responsibility to question whether the law's intent was served. Many books have been written by experienced ethicists and legal minds to illustrate the need to temper justice in that way.

Some of the unknowns in this matter will be answered by the outcome at Cardinal Glennon Hospital. I hope we in America never grow to feel such facilities are superfluous.

John

*One interpretation is that the court ordered the parents to consent to removal of the respirator, i.e., it did not order the respirator to be removed. I have not read the court order. However, that is not really the question here, just as "playing God" is not the issue.

 

Baby Joseph Got the operation in a U.S. hospital,I'm not against
life,I want every one that wants it to the very end. I enjoy life
that why I have that opinion. I reach out for more and better life
every day.I want to enjoy that life to the fullest with everyone.
Sharing life with others is a great experience. There is a perfect life,
you have to find it and define it.It just don,t just happen you make
it in this imperfect world.So many things make life what it is,it can
be reversed,twisted,torned and terrible,but its life.

 

Here's a related commentary by Dr. Manny Alverez: http://www.foxnews.com/health/2011/03/22/tracheotomy-alleviated-baby-josephs-pain/?test=faces

I agree with him. BTW, the baby's disorder was not mentioned previously in press reports. Reports now identify it as Leigh Syndrome, which is related to the mitochondria. As you know, mitochondria come from the mother, and that explains how a male can be affected, but not pass it to his offspring. Modern genetics has described several such disorders.

John