ST. LOUIS — Joseph Maraachli, the 16-month-old Canadian boy who received a tracheostomy March 21 at SSM Cardinal Glennon Children’s Medical Center in St. Louis, had a lot of people helping him, once his story became known.
Priests for Life helped transfer the boy, who suffers from a progressive neurological disorder, from the Canadian hospital that had refused to perform a tracheostomy on him, a procedure that had the potential to protect and preserve his life. Many people across the country responded to an appeal for donations.
And an Ohio neonatologist, a longtime pro-life doctor, was part of a network of people who were instrumental in the transfer of baby Joseph from the London (Ontario) Health Sciences Center to Cardinal Glennon.
Dr. Paul Byrne’s involvement in the case took a providential turn when he was able to assist Joseph’s family in having the child baptized. Byrne is past president of the Catholic Medical Association (USA).
The boy was baptized by a Catholic priest in St. Louis on March 18.
Prior to this, Joseph was a patient at the hospital in Ontario, Canada, where doctors were planning to remove his nasotracheal tube, making it highly unlikely he would have been able to breathe on his own, and to sedate him if he struggled.
Byrne discussed what went on behind the scenes of this story.
Doctors had called Joseph’s condition a progressive neurodegenerative disease. What kind of treatment was he receiving at the hospital in Canada, what was his situation at the time the transfer was sought, and what were the medical implications?
Baby Joseph had a nasotracheal tube for five months. This is very unusual and potentially quite dangerous to the patient. When a patient has such a tube lodged in the throat for an extended period — for example, longer than one to four weeks — if the tube is removed, it is by then very unlikely that the patient will be able to breathe on his own due to the potentially lethal damage caused by the delay in removal of this kind of tube. Thus, it is essential that such a tube be replaced promptly by a tracheostomy, rather than be delayed, as occurred with baby Joseph.
A tracheostomy is a tube placed surgically through the neck into the airway. It is a relatively simple, routine procedure that definitely increases both comfort and safety for the patient. Joseph likely suffered because of the delay.
His doctors in Canada, who recommended that the tube be removed without the medical precautions necessary to compensate for throat damage, planned to administer morphine or similar medications if Joseph struggled in his attempt to breathe. This would have led to his death.
What happened when Joseph’s parents refused to accept this?
The doctors, not the parents, went to the Consent and Capacity Board [created by the province of Ontario in 1993 to resolve family-hospital disputes.]
After the hearing, which did not include any doctor to present testimony in favor of the tracheostomy, the board directed Joseph’s parents to consent to removal of the breathing tube without replacement, a do-not-resuscitate order and palliative care.
The parents had 48 hours to agree to the treatment. If they did not consent, the decision made clear they would be deemed unsuitable for making decisions for their child.
How did you get involved in the case?
An attorney from Canada asked by phone if I could help find a hospital where baby Joseph could be treated. Since I was leaving to go overseas in a few hours, I was not able to help at that time.
A private network had begun working in the background on Feb. 18 to get Joseph to where he would be willingly treated. Plans for Joseph’s imposed death were impending, and it was imperative to get him to a safe environment as soon as possible, while finding ways to keep him alive in the meantime.
When I returned March 6, I realized the ongoing urgency to get Joseph out of the clutches of the doctors in Canada, and I became aware of the increased massive efforts, strategies and tactics that were diligently being implemented on the part of the coordinated private network largely in the background (and by design in the foreground) every day — sometimes hour-to-hour or minute-to-minute — just to keep Joseph alive in order that there would actually still even be a living baby to transport to the potentially found hospital.
A baby with an endotracheal tube needs constant attention to keep the tube in place and to keep the tube suctioned. Even a short time with no attention can be life-threatening.
Joseph also was fed with a tube, requiring many precautions and care. During this critical and very challenging period, I heard how the doctors in Canada would, for instance, take Joseph off the ventilator for one to two hours, theoretically attempting to wean the ventilator support. Their chosen “crash” method was an unsafe and inappropriate form of “weaning” that in fact dangerously stresses some of the infant’s vital functions in a potentially lethal manner.
What was going through your mind during this phase?
I often wondered in astonishment at how this baby could possibly still be alive, given the hospital’s seeming motivation to impose death on Joseph in the meantime.
How much time passed before the private network was able to expedite the transfer of baby Joseph?
It was about four weeks before a hospital was found that would accept him. Keeping him alive day-to-day all that time was a vigorous and demanding challenge second to none in the whole operation.
It’s no coincidence that Joseph remained alive all those four weeks. God continued to say Yes to Joseph continuing to live. It took an enormous operation and effort. Lots of people were involved in that process, some even unwittingly. It was a matter of day and night figuring out enough of what the London hospital was up to or most likely up to, and then conceptualizing/harnessing and executing methods and means to keep Joseph alive until the U.S. hospital finally got secured.
But few people understand that fundamental “story behind the story”: that if Joseph hadn’t been kept alive during those four weeks by numerous clever ideas and actions, there would not have even been a Joseph to fly to the U.S.
Once a U.S. hospital agreed to take Joseph, was everything resolved?
Even after Cardinal Glennon Children’s Medical Center had agreed to accept the transfer, the doctors in Canada put other obstacles in place to attempt to keep Joseph.
During and after the transfer arrangements, there were a few irregularities. For example, this was my first experience where ethics committees were instrumental in deciding whether to accept transfer.
I have been a physician for 54 years, during which time decisions around transfers of patients have been done between referring and receiving doctors. But before Glennon would agree to accept Joseph, the ethics committee there had to first agree that the transfer was “ethically acceptable,” even though the receiving doctors had already determined it would be appropriate medically. Then after Joseph was admitted and before the tracheostomy was done, the ethics committee had to agree to the need for the procedure.
After the tracheostomy, it took about three weeks to wean the ventilator from Joseph as he gradually increased his own breathing. Likely it took this long because he had been kept on a ventilator and tube too long. The tube through Joseph’s nose had been taped to his cheeks for five months. The skin of his cheeks was peeling and raw. In a few days after the tube was removed, the healing of his cheeks was evident. It had to be a relief to Joseph not only to breathe more easily, but also to get the tape off his sore cheeks.
In Canada, Joseph’s tracheostomy was determined not to be palliative care, which is straightforward, proper standard-of-care in this kind of situation. At Cardinal Glennon Children’s Medical Center, the tracheostomy was considered palliative care.
A tracheostomy and standard weaning off a ventilator should have been an easy decision for baby Joseph. The public should now be educated to see that this was only a simple, fully entitled therapeutic intervention that every child has a right to and should not be seen as something extraordinary that has to be struggled over.
What was your most gratifying moment in the baby Joseph case?
One of the most exciting aspects of my participating in the treatment and care of Joseph was arranging his baptism. I asked Joseph’s father if anyone had asked about baptism. He said, “No.” He then told me he was not Catholic, but that he wanted Joseph to be raised in the religion of Joseph’s mother, who is Catholic. The next day Joseph was baptized at Cardinal Glennon Children’s Medical Center.
Joseph is now a living baby at home under the loving care of his parents and his brother, Ali. There is no way to know how long Joseph will live. But we know he will live longer with the tracheostomy and the love of his family, and, finally, he and his loving family are living as families ought to be permitted and fully supported to live.
Register correspondent Judy Roberts writes from Graytown, Ohio.
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Thank you for providing an immense amount of sound information and bringing to light the details of Baby Joseph’s current situation. Since the day I heard of his situation I have prayed intentionally for Baby Joseph’s comfort and for that of his family. As a Catholic, I am deeply grateful that Baby Joseph received baptism. That news brings some salve to his story. Deo Gratias!
And most importantly, we know that through his Baptism, he will have eternal life with our Heavenly Father…praise be to God! Thank you Dr. Byrne’s and Fr. Frank Pavone, may God continue to bless the world with these men, so strong in character and devout in faith.
Unfortunately, virtually all of this account is untrue. End-of-life disagreements do occur, and should be debated on fact and respect.
Whether individuals are pro-life or not is not up for debate. Facts and integrity are what is important. The London medical team is second to none and treated Joesph with dignity and respect (despite this report).
Dr Byrne’s accounts are false, disrespectful and constitute professional misconduct. It is time for healthy debate and to explore why their were differences in opinion, not false accusations.
Hopefully all reasonable Catholics will read this account with skepticism and look deeper for the real issues.
Thank God for the Catholic Church and its logical teachings on this kind of care. What scares me is how many other Joseph’s died by the hand of these doctors because of their lack of medical care,and concern. This has been a reallly scarey situation. Is this a premonition of what is to come for us with Obama Care? Thank God for Catholic doctors like Dr. Byrne and all the others who are faithful to their hypocratic oath and the Catholic faith. Thanks for the information
How wonderful there are still ethical, faith filled, caring medical personnel like Dr. Byrne. Thank you for sharing the details Ms.Roberts. May God continue to bless you both in your work!
@Jeff: What is your source of information for you to charge Dr. Byrne with bearing false witness? Were you directly involved? If so, what role did you play and what knowledge do you have?
@Brandy
Many of the discussions and much of the evidence are in the public domain, the consent and capacity board and the supreme court. Also, the doctor in St Louis publicly agreed with the Canadian doctors in most respects: including diagnosis and prognosis for this little boy (St Loius paper interview). He stated the boy only had 4-6 months to live with the tracheostomy.
Dr. Byrne is a “neonatologist” not a “pediatric ICU doctor” (i.e. wrong specialty). There is no evidence or statement to suggest he ever saw the patient? He has been in the prolife literature many times with ridiculous statements on brain death and organ donation. This is simply another time he is extending his agenda using misinformation.
Doctors and nurses are not evil, they are human. This was no doubt a difficult case for all. Explore the facts. The ongoing conspiracy theories and false information should stop to respect the little boy.
By the way, I am catholic and prolife. Any logical person should read this and question.
@jeff @brandy I would support Jeff. We need to be very careful about patting ourselves on the back here, and implying anything but professional processes at London. I have an obvious question - what has been done may have met the demands of the parents and the Roman Catholic Church - at significant cost, and with allocation of scarce resources. BUT, has all this really been in the best interests of the patient? I know already that there is a view in our community that it is a political, not humanitarian goals that have been addressed here.
I think some folks are lost and possibly have the wrong ncr site. That is the one for fallen catholics.
@Evan and Jeff: It is not being suggested that the doctors and nurses are evil. The road to hell is frequently paved with good intentions, and I’m sure that’s the case here. A tracheotomy is a simple procedure and does not cost hundreds of thousands of dollars nor does it deprive anyone else of precious resources. It made no sense to deny such a simple procedure to the child so that he could die at home, which is all that the parents were asking the doctors to do.
As for Dr. Byrne’s questioning of brain death and organ donation there is much evidence to support his statements. Brain death is not a real condition it was something the AMA came up with in order to enable them to harvest living tissue which has a much higher chance of success. It is not a decided matter at all, and new evidence points to the fact that even a brain that is so severely damaged as to appear dead can eventually heal and begin functioning again.
You need to realize that the mainstream media is largely owned and operated by people who are strong supporters of euthanasia, assisted suicide, abortion, and a whole host of other things non-Catholic. If you’re deriving your information solely from them you would do well to research everything you read before you make a judgment.
It is always in the best interest of the child to die at home in the arms of people who love and care for them.
What you do to the least of my people you do unto me. This was the right choice.
@Jeff, I agree and support your comments. @Patricia, because of ObamaCare, children can no longer be denied healthcare. Insurance companies must accept them regardless of any pre-existing conditions which was what was happening prior to ObamaCare. When ObamaCare is fully implemented, adults, no matter what pre-existing conditions they may have, cannot be denied healthcare either. I am in contact with several Canadians. They LOVE their healthcare. No one in Canada goes bankrupt because of illness or death-Americans do. BTW, I feel calling the new healthcare bill ObamaCare is good. President Obama should get credit for trying to provide healthcare for all. That is truly prolife!
@jeff just i want let you know about consent and capacity board and the supreme court. Also, Canadian doctors the decision was ready before and they are one team .and now all this people was wrong and my baby prove for them they are wrong and if they win Joseph…. will be murder .must that doctor be out fro this hospital because he is danger for all disability babies. and he’s chief too ...thank and big thank for Dr. Paul Byrne.and thanks and big thanks for Dr wilmott in Cardinal glennon st Louis USA .and shame on that doctor he should fell sham when baby Joseph breath on he’s own
You leave out the part of ObamaCare that funds Planned Parenthood - I suppose the destruction of the unborn is truly prolife as well in your book.
Also, not true - the majority of Americans prefer their health care/doctors and absolutely don’t want Canadain Health Care. Why, because it does not respect the unborn, elderly, or handicapped, as this article proves once again. How do you think they pay for it?? Those that need it most are expendable..
Absolutely right on Patricia!!
Claire: You are so right! And I applaud the doctors and Fr. Frank Pavone who worked so hard to save this beautiful baby boy’s life!
For those who want to investigate, for themselves, the unfair accusations made by Jeff against Dr. Paul Byrne: “ridiculous statements on brain death and organ donation”, I invite you to please judge for yourself by going to this website: http://www.truthaboutorgandonation.com It contains the exact teachings of the Roman Catholic Church on the subject of organ donation and several links to the work Dr. Byrne has been devoting his life to for so many years.
@brandy On the contrary, almost everything I read is quotes from the parents, and church-related people who support the intervention. The original hospital had its say at the outset and since then has maintained a dignified silence. You know as well as I do that although the tracheotomy procedure may be simple, there have been significant costs of extended hospitalisation, 24 hour care, travelling about with the child. Even now I understand that medics of some description are making very frequent house calls. As for brain death, we know it is a more reliable indicator than cease of heartbeat - we learned that over 40 years ago. I agree proper research is needed, and in particular we need to move away from those skilled in the silky arts of Apologetics! Your posting here suggests that Apologetics is indeed a specialisation of yours.
@jeff. I agree with you completely. Something is terribly wrong with this story!!!
Dr byrne has some explaining to do!! Why did his own catholic hospital in toledo refuse this child??? This was reported. On fox news toledo!
Why did it take weeks to find a single catholic hospital??
This is clearly not straight forward and I fear dr byrne is manipulating us…..but why dr. Byrne???
I agree with Claire completely. Obamacare will give access to health care to millions that had nothing before. Their only care was when in an emergency situation to go to the ER and many times be told it was too late to do anything about thier condition. These people had no access or funds to pay for preventative medicine which only causes a higher expense for our country when they did get deathly ill.
This sounds like a political ploy to me as well. I pray that Obamacare will go forward to help the millions of hard working poor that have nothing now. The insurance industry is very corupt and are spending millions to fight this. Its all about money not concern for human beings.
I do not consider it a sin to allow a terminally ill person, suffering in pain and discomfort with no chance of getting any better to die. I do not mean to take any measures to cause death but to stop non helpful treatments and allow the person or child to go to be with the Lord. Some people just can’t live another day w/o suffering more to stay alive and in my opinion that is cruel and selfish when there is no hope. I sure would not want it for myself or anyone I love.
Just because you can extend life at great pain & suffering to the patient does not mean it is the right thing to do.
For those of you who say that ObamaCare provides health care to the needy it does no such thing. It provides forced health INSURANCE. Health insurance is not health care. There are still premiums to be paid and pharmacy costs to cover. Those who can’t afford to buy the darn health insurance will be penalized for not having it, and won’t be able to afford to take advantage of their forced “benefit” anyway. It’s not a system designed to help the poor but designed to make those who aren’t perceive that the problem has been taken care of without actually doing anything about it.
Their payment will be based on their income. I know many right now w/o health care and if they have the flu or something like that they cannot go to the doctor w/o it costing them over a 1/2 months salary. So they don’t go until their so sick they are dieing. They can’t afford the present health care available because it would also take a 1/2 months salary. We need something based on income.
It both angers and saddens me that Baby Joseph was so mistreated & abused at the Canadian Hospital when all his family was asking for was a tracheostomy so that he could go home with them and be cared for with love & dignity. Instead this hospital chose to keep a tube in him for months and tape on his face causing him pain and suffering. Thank God that he survived this torture and mistreatment. What kind of people and hospital tortures infants?
Baby Joseph’s parents are heroes and had the fortitude to take on the Canadian Courts and the death panels of the socialized medical community to save his life. They are True Heroes!!
It is God who decides how long we have on this earth and not the left winged death panels and baby killers. Baby Joseph is now at home being cared for by his loving family and not being medically abused. When it is time, he will go from his parent’s loving arms to God’s and he will have Eternal Life. For those who have tortured & abused him, you will be judged accordingly.
It both angers and saddens me that Baby Joseph was so mistreated & abused at the Canadian Hospital when all his family was asking for was a tracheostomy so that he could go home with them and be cared for with love & dignity. Instead this hospital chose to keep a tube in him for months and tape on his face causing him pain and suffering. Thank God that he survived this torture and mistreatment. What kind of people and hospital tortures infants? Baby Joseph’s parents are heroes and had the fortitude to take on the Canadian Courts and the death panels of the socialized medical community to save his life. They are True Heroes!!
It is God who decides how long we have on this earth and not the left winged death panels and baby killers. Baby Joseph is now at home being cared for by his loving family and not being medically abused. When it is time, he will go from his parent’s loving arms to God’s and he will have Eternal Life. For those who have tortured & abused him, you will be judged accordingly.
@Jeff @Evan…thanks for making me look past the surface.The real story is about this unfortunate, voiceless child.
if any wan ask Why did his own catholic hospital in toledo or other hospital refuse this child??? should ask this for LHSC and that doctors in PICU why they send wrong information and what they talk about me and my wife ...please guys come on i am not happy when i talk about that Canadian hospital but no one was with me in hospital and i always i say truth my baby was in LHSC like he’s in jail like any criminal wait penalty death.and all i9nformation come out to media from doctor was lair and wrong .and one day i prove everything because i never forget what happen with my family my baby and me .did any one know Michigan childrn hospital accept my baby and after PICU in LHSC talk to them they refuse and did any one ask him self one time why my baby case come big like this and all what he need (treach)very small surgery and i ask to send him home if he will die let him die with us peace fully why that happen ..one answer that doctor he’s enemy for disability babies or he is mentally sick should be out of this hospital .....
“For those of you who say that ObamaCare provides health care to the needy it does no such thing. It provides forced health INSURANCE. Health insurance is not health care”.
You miss the point. Abortion should never be considered part of health care and under ObamaCare that is exacty what it is - the escalated taking of human life of the most innocent while forcing those that know this truth to pay for it. It doesn’t get much more evil than that - and it is a truth we will all be held accoutable for at our judgements.
According to public documents, the baby received a high level of care. The statements by mohammad maraachli (the muslim father, in quotes) reflect the fathers interests, not josephs. It is clear that the tone changed from do everthing to keep mmy baby alive at all costs (in court), to give him a tracheotomy so I can bring him home to die (after loosing in court and talking to the press).
To move the prolife cause forward, we must discuss facts and focus on the patients. The ongoing release of misinformation by dr byrne and colleagues only hurts our cause. As someoe else commented, it isrelevent that dr byres toledo catholic hospital adamantly. Rrefused the patient? Also, I wish every family had good intentions, but this is also not the case.
@Janice, I absolutely agree. I know people without health insurance too. Without health insurance they don’t have healthcare because they can’t afford it. Sure they can go to the ER in an emergency, but by then, it is often too late. And the hospital will bill them and their family for the costs-at thousands and thousands of dollars. I have a friend who is diabetic. She doesn’t have health insurance therefore she can’t afford the routine care that diabetes need. What she does try to do is to keep her weight in a healthy range, eat right and exercise. Is that enough? I don’t know neither does she. Without health insurance, she can’t afford the doctors office visits or any drugs she might need to keep her diabetes in a safe range. She and her husband don’t qualify for medicaid. They are the working poor. If my friend or her husband have high blood pressure or high chloresterol, they don’t know it and unchecked, without the right meds, this would eventually cause heart attacks or strokes. Preventable diseases if you have health insurance that help you pay for your healthcare. We in the US are the only industrialed country where people go bankrupt because they are ill or die without healthcare because they can’t afford it. We must do better.
The president signed a bill to make sure no money from the healthcare went to abortion. I did have a link to the bill signed by Obama but I’m not going to look it up again as it will not change those minds against it because most are just worried they will pay extra taxes or pay higher health care. I have posted link on other blogs, etc and it had no effect on those against it. Using that reason is just nicer than admitting the truth that they don’t care if these people suffer w/o coverage. @BRANDY MILLER, who would not want heath care if they could afford. Maybe a few very irrisponsible people w/o good sense. It is better and less expense for our country and our people if everyone has access to preventative care. I would bet you have coverage.
Public documents show there was a high level of care? The public documents are full of all kinds of reason to question Joseph’s care along with evidence of LHSC twisting information as well as neglecting to mention certain medical information to the Consent and Capacity Board. One can lie by commission or omission and there have been occasions when LHSC’s testimony or statements are questionable and appear to fall within the parameters of intentional omission of information that may have made a difference in the decision of the Consent and Capacity Board with regard to Joseph’s care. The court case was not about determining whether or not removing Joseph’s breathing tube was the “right” thing to do or in Joseph’s best interest rather it was about whether or not the law as it is currently written was technically being followed. What the judge believed to be in Joseph’s best interest was not within the scope of the judge’s authority. As far as Dr. Byrne misrepresenting anything, I have read and studied this case and the public documents and Dr. Byrne has misrepresented nothing, anyone who believes that needs to study the facts a bit more. Passing judgement upon this family and their fight for their son’s life can only come from ignorance of the facts. What loving parent would knowingly agree to their child being drugged so as to facilitate their child being suffocated by their own mucous? That is the reality of what was being demanded of the Maraachlis. Anyone can study up on common medical procedures and treatments on any number of unbiased medical sites and discover for themselves that there are numerous reasons to question Joseph’s care at LHSC. It is truly tiresome to read the ramblings of those ignorant of the facts of this case. So much opinion based upon so little fact.
Those who are interested in hearing some of the facts in the Joseph Maraachli case that many in the public are not yet aware of can do so by clicking the mp3 link beside the earphone clipart at the bottom of this page http://www.radio4all.net/responder.php/podcast/podcast.xml?program_id=51611&version_id=57834&version=1
It is going to take some time to clear up some of the misinformation that has been piling up, but there are those attempting to educate a naive public. Anyone who wants to hear horror stories about the attitudes of some, not all, but some in the medical profession need only to visit with families of severely disabled children. After some of the facts of the Joseph Maraachli case came to light many different families began sharing their own experiences and struggles to get appropriate care for their disabled children. I used to be one of the naive public. Reading and listening to the stories of other families and studying the facts of the Joseph Maraachli case and comparing statements and testimony made about Joseph’s care and medical treatment to information available on unbiased medical sites as well as studying up on some of the policies that have managed to be passed as well as those that some doctors are currently trying to pass has been a rather disturbing and eye opening education. The public had best wake up before they find themselves in a similar battle over the care of one of their loved ones. You may already not have the rights you think you do and trying to stand up against a hospital with deep pockets is not something most families can manage. There was a lot of misrepresentation of information in the Joseph Maraachli case and those interested in knowing what this family was actually up against may find this interview sadly educational.
“...the doctor in St Louis publicly agreed with the Canadian doctors in most respects: including diagnosis and prognosis for this little boy (St Louis paper interview).” Hmmm were you reading and comparing the same facts? Read the Consent and Capacity Board decision and the press releases from LHSC and then compare the press releases from Cardinal Glennon and the interview from the St. Louis paper. First off there was no formal diagnosis made at LHSC. Their only diagnosis was that Joseph has a degenerative neurological disorder. That’s a pretty broad diagnosis. Yes the prognosis for the length of Joseph’s short life is for a similar length of time except that several months already passed before Cardinal Glennon gave their estimation of the same length of time. No one has a crystal ball and end of life estimation is at best a guess and hardly science and certainly not a valid argument to deny a family as much time together as possible. Let us also consider how much more time the Maraachli family could have had at home together if LHSC had not drug them through hell for months. It was the end of January when the Consent and Capacity Board decision occurred, it is now June. LHSC could have given Joseph a trach 6 months ago in December. Pretty much every other description about Joseph’s condition made by LHSC was contradicted by the medical staff at Cardinal Glennon. Joseph is not PVS, he does respond to his family just like they said he does, and he can breathe on his own etc. Many of the criteria that LHSC used to convince the Consent and Capacity Board to allow the removal of Joseph’s breathing tube against his family’s wishes have now been found to be false. Let’s remember also that LHSC described a trach in the most negative light possible, indicating a risk of infection and a concern about causing Joseph further discomfort when the truth is it is a common procedure done to improve the comfort of the patient. Not to mention the fact that choking to death on one’s own mucous is not likely to be a pleasant experience, but LHSC didn’t dwell too much on that fact as it would not have furthered their case. Besides they were more than willing to drug the child so he wouldn’t fight too much. There is no shortage of evidence against the claims LHSC has made and this case is far from over in the legal and political realm. The question is whether or not everything will become public knowledge or not and if the right people will actually be held accountable or if there will only be a token show of accountability with little change to the system as it stands in its current dysfunctional state.
Quotes from an interview with Dr. Wilmott who treated Joseph at Cardinal Glennon Hospital:
http://www.stltoday.com/lifestyles/health-med-fit/fitness/article_dec68335-96b4-5d98-88b3-dcd2f7a76cde.html
-“There was a baby we thought we could help and a family in a lot of pain,” Wilmott said. “We made a decision based on the merits of the case.”
-“Our decision would have been the same if we had a Catholic affiliation or not,” he said.
-“We’ve seen some responses I think other doctors didn’t witness,” Wilmott said.
-Joseph would sometimes open his eyes and demonstrated other spontaneous movements while at Cardinal Glennon, the doctor said. The child seemed to respond to touch and liked having his arm stroked.
-Wilmott estimates the baby has another four to six months to live.
-Wilmott said he didn’t consider a tracheotomy to be invasive, and that it was a reasonable request by Joseph’s parents.
-Wilmott does not think the tracheotomy will significantly change Joseph’s life expectancy, but it should make him more comfortable.
-A smaller number of critics took to blogs and message boards calling the parents selfish. The public should know that is untrue, Wilmott said. The Maraachli family wanted what was best for Joseph and they were easy to work with, he said.
- In the case of Baby Joseph, Wilmott said, it was rewarding to give the family what they wanted — as much time as possible with their child at home. “The focus was really on Joseph, and doing the right thing by him.”
@jeff, you use the St. Louis interview as a reference and yet you seem to ignore what Dr. Wilmott said about the Joseph Maraachli case. Dr. Wilmott was quite clear about the Maraachli’s motivation and doing what was best for Joseph. The “high level of care” Joseph received at LHSC is very much in question considering he was forced to live with a breathing tube for 5 months and was kept on a respirator when he should have had a tracheotomy and weaned off the respirator months ago. LHSC knew Joseph would likely be able to breathe on his own if they did a trach, the respirator settings were such that he was already mostly breathing on his own. (There is apparently photographic evidence of the respirator settings.) LHSC did everything they could to discredit what the Maraachli’s claimed and believed about their son. The Maraachlis said Joseph reacted to them, LHSC said the Maraachli’s were simply seeing what they wanted to see because really Joseph was PVS. The staff at Cardinal Glennon witnessed spontaneous movements by Joseph and that he reacted to his parents and to having his arm stroked. Joseph only spent a few weeks at Cardinal Glennon and several months at LHSC. Are we really to believe that the staff at LHSC did not witness similar behaviour? The Maraachlis said they wanted a trach for Joseph and that they believed Joseph would be able to go home and not be on a respirator and LHSC said a trach was dangerous and that they tested Joseph and he couldn’t breathe on his own for extended time. Yet after the trach was performed at Cardinal Glennon and appropriate weaning from the respirator was done Joseph had been breathing on his own for a week before it was announced in a press release. Joseph was also allowed to go home from Cardinal Glennon rather than to a nursing care facility, which was originally considered if he continued to require a respirator. All of the discrediting evidence LHSC used against the Maraachlis has now been proven by Cardinal Glennon Hospital to be false. It is high time more of the public became aware of the true facts of this case instead of the inaccurate and slanted view some people are continuing to spout. This family was robbed of months they could have had at home with their whole family together. As if having a child that is expected only to live a short time isn’t difficult enough, the Maraachlis were forced to live through legal battles and the constant fear their son would be forced to suffocate to death. The public should be up in arms over the fact that this family was denied months of time they could have spent together at home. They were robbed of something that can never be repaid. It is my hope that some lessons have been learned from this case and that the public will expect more compassion be shown toward families faced with similar issues. Anyone who wants to believe that this was about money and that the cost of a trach and in home care was maybe a factor for why LHSC didn’t want to go down that road may want to consider that tens of thousands of dollars were spent on the legal battle. It would have been substantially cheaper to perform a trach and send Joseph home. This was not about money. We should be asking why? Why was LHSC so adamant? Why did they dig in their heels so much and fight this so hard? Now that much about Joseph’s condition has been shown to be different than LHSC described it to be should we not be questioning what really has been going on here?
In defence of Dr. Byrne…
To the onlookers and to the commenter who wrongly claimed that “virtually all of this account is untrue”, please be advised that Dr. Byrne’s quoted statements as found in the current publishing of this article are in fact accurate. Although they certainly do not reveal anywhere near the whole story, and unfortunately only a very small part of it, Dr. Byrne’s statements here are nonetheless accurate points—one and all. The authority from which I assert this is by virtue of my role as Community Organizer and manager of the rescue mission for the Maraachli family, through which role I personally oversaw this operation. More specifically I began this work informally on February 18th—the day I asked lawyer Geoff Snow to telephone Dr. Byrne as mentioned more generically in the article above. By February 20th, given the excellent work accomplished in the first two days by my private network (the same “private network” mentioned generically in the article above), I was formally asked by the Maraachli family to publicly and officially assume a rescue operation management role. They gave me full decision-making powers and they agreed to follow my idea of instead getting Joseph out of the country and safely into a different hospital outside the geography of Canada. I maintained that position of lead for the rescue mission until Dr. Byrne and I completed the securing of the Cardinal Glennon hospital as the facility to receive Joseph Maraachli for the simple (but Canadian-blocked) surgical intervention and ventilator-weaning that enabled Joseph to return home with a trache and no ventilator… according to the moral and human rights of Joseph and his family and the legislative power of the United Nations Convention on the Rights of the Child which Canada had years ago officially ratified their submission to.
Another factual aspect that ought to be mentioned: As this is a Catholic publication and there has been a considerable amount of inaccurate media reports across the country, I would like to here publicly credit the additional involvement of two devout Catholics who originally identified to me the prospect of the Cardinal Glennon hospital: The first time the Cardinal Glennon Children’s Medical Center (the “Glennon hospital”) was brought into the baby Joseph Maraachli matter was actually on March 2nd, 2011, at the suggestion of the wife of a mid-eastern USA doctor with whom I was regularly communicating for expertise support on the baby Joseph matter (this outstanding doctor and his very clever wife wishing to remain anonymous for the present moment). Four days later an additional individual who is in my personal network—none other than Ohio’s Dr. Paul Byrne himself—independently recommended to me that same hospital for Joseph. What was particularly interesting to me in Dr. Byrne’s duplicate echoing of the first suggestion is that—as he disclosed to me in that March 6th conversation—Dr. Byrne himself is _the_ distinguished neonatologist who first opened and ran the Cardinal Glennon hospital’s Neonatal Intensive Care Unit almost fifty years ago! He was also the Glennon hospital’s very first intern. How’s that for legendary heritage with the target hospital that we needed to get on our side? It seemed providential to me. You can see why it was easy for me to decide to switch my choice of doctors and assign Dr. Byrne instead to the critical task of negotiating with the Glennon hospital to receive baby Joseph’s transfer. (Originally I had tentatively selected a different, third doctor on the east coast). Thus, on that pivotal day of March 6th, 2011 I assigned Dr. Byrne to the task of fronting the negotiations with the Glennon hospital in order to persuade them to accept Joseph as a transfer patient. Within the next four days of that, Dr. Byrne in his very excellent work in that role secured the opportunity with the Glennon hospital, the only other participating person being myself in the final stage of negotiation (and at one point I briefly brought Joseph’s father Moe Maraachli into discussion with the Glennon hospital’s Chief of Pediatrics, Dr. Wilmott, in order to directly answer a few remaining questions). That was it. No one else was involved in suggesting or negotiating with the Cardinal Glennon hospital for baby Joseph. Contrary reports in the media are therefore all inaccurate despite the unfortunate aspect of their being rampant.
There were numerous other people I had employed inside and outside of my private network to make everything happen. There was also an organization outside of my network (PFL) that offered to arrange (temporary) payment of the US hospital bill. And there was yet another organization, Kalitta Medflight of Michigan, who donated the logistically/legally crucial and very expensive medical air ambulance services for Joseph’s medical transport flights. (Thank you very much to Kalitta Medflight who only too rarely gets their well-deserved credit and appreciation).
As to other aspects of the above NCR article beyond Dr. Byrne’s factual quoted statements, I should clarify that, perhaps per common writing challenges, certain contextual elements on the part of the writer of this article could certainly confuse some of the history in the Joseph Maraachli matter, but that is apart from the verifiable accuracy of Dr. Byrne’s statements as quoted. (Btw, these facts are supportable by mountains of evidence in safe, multi-location possession and which will eventually be published in its appropriate parts).
Fortunately, the true story about the rescue of baby Joseph is much more involved, detailed, noble, and far more beautiful than the various untruthful versions out there. And one of the most beautiful parts of the story is the heart and phenomenal work of Dr. Paul Byrne of Ohio who I here wish to honor for his pivotal role, though as he would say, all glory itself belongs to God.
I am the working poor. Quite frankly, even when I can afford to buy insurance I CAN’T afford the co-pays. This means even when I have health insurance I often still can’t take advantage of it and therefore do not have health CARE. Do you folks not understand the difference? Health insurance does NOT equal health care.
Brandy, I am sorry you are the working poor. And I understand that co-pays can be expensive. I don’t know if you have children. I have two daughters, now adults. My youngest seemed to get strep throat every time I turned around. And my oldest needed eye surgery at a cost of over $10,000. We were poor too. But we had health insurance through my husband’s work. We paid a insurance premiums and copays. Health insurance enabled me to take my daughters into the doctor whenever I needed to. If my rent, or the water bill was going to have wait, or dinner was cream of mushroom soup with tuna fish over toast (it was sometimes) because I had to take care of my daughters health, that was what I did. Insurance IS healthcare. If we did not have health insurance, we never would have been seen by a doctor. In an emergency, the costs we would have incurred would have been prohibitive. I had a tumor on my spinal cord. If i had not been able to get an MRI, it would never have been found. I was in the hospital for 9 days. The cost was over $50,000. DO you think the doctors would have ordered the MRI or done the surgery without my insurance? NO. They would not have touched me until I was paralyzed because that is what was going to happen. With health insurance I have minimal deficits. Yes, health insurance IS healthcare. I am sorry if health insurance is out of your reach. It should not be. If people do not have health insurance through their work, then they should be able to buy it on their own. If they are poor it should be provided on a sliding scale. Health insurance IS healthcare. Without health insurance people don’t have access to healthcare. It should not be that way. I don’t understand that anyone who wants to protect life doesn’t feel that everyone should have health insurance so they can have healthcare. Either that or we need single payer healthcare where no one needs to worry about dying or going bankrupt because they got sick.
There’s nothing noble or beautiful about keeping a suffering, terminal child alive so the family can make money off of him. That is child abuse and disgusting…and it’s happening in front of everyone’s eyes.
@Windsor, I agree.
I thought he was saved by default because he wasn’t old enough to be accountable. Or is it just Protestantism?
I think I understand. The Catholic Church baptizes babies, Baptist churches prefer to baptize conscious converts, children or older. I was saved and baptized at 23, 18 years ago. My parents were hands off in this matter but supporting, Mom more than Dad. It probably helped bring Mom back to Christ and perhaps even Dad, I do not know.
Something like 19,000 people a year died without health insurance in America. The Republicans thought it was no big loss.
My parents did teach me their politics if not their religion. “Jimmy Carter was the best President we ever had” Mom said
After age 25 my 3 year extension of Federal health insurance benefits (originally to age 22) ran out. After grad school I couldn’t even get a trashy health insurance plan. While I was looking for a job, and before I was a Federal employee myself at 27, I got cancer. In a matter of weeks I owed $12,000 but was easily cured and my life was saved. Most of the bill was eventually forgiven but I estimate perhaps $3,000 or $4,000 eventually paid out of pocket within 18 months.
The state of Maryland ultimately decided that I had had a small disability that complicated my job interviews and decided I should be retrained at its expense in a non-competitive job field (computer programming). The wtrategy worked and I am still employed in it 12 years later.
Good people doing the right things get sick all the time. It is no problem to a Republican. It is to a decent human being.
I believe in the Canadian system, healthcare and otherwise. I am at least 20% of the way to emigrating to Canada to be a citizen. I honestly believe I am more Canadian than American at heart. I am most concerned about the possible American police state that is coming (or here) and if we have blown it as far as the national debt.
What holds me back is that I was born an American and that if everyone ran away from America instead of made it better we would really be screwed. For example I think the Mexicans should try to kick out the drug lords, declare war. I would be no better coming north to take a Canadian job than a Latino coming north to take an American job. I believe people already in the country have more claim to work than the newcomers. Do unto others…. I do not want to deprive anyone up there of a job any more than I would wish to be deprived of a job myself.
Maybe one day if I am hassled by Homeland Security…. I could be tempted to look for somewhere else English-speaking where there is still rule of law.
More conspiracy theories, fiction and story telling. No evidence or fact. Just the same ongoing claims of covert operators and rescue missions, and the same handful of people pushing their agendas over the non-regulated internet. Again, this type of behavior only hurts our cause. Thank fully the vast majority of NCR readers are rational and intelligent.
@ poster using “Windsor Ontario” label:
1. Joseph Maraachli is not “suffering”. Rather, he was likely suffering/uncomfortable when they kept a tube jammed down his throat for five months. That was appalling, and cruel. The tracheostomy, on the other hand, relieves that kind of suffering. Tracheostomies create comfort, in several ways. And although I can’t disclose details here, it would seem to me from the reports I have reliably received most recently that Joseph is actually having some notable enjoyment in his life since coming home. Please think about this carefully. You might find that if you do, your own life could become more enjoyable too! It is awesome to dwell in accurate knowledge of these things. You will see good where you didn’t know it existed before. Think about it; Joseph’s quality of life has IMPROVED. That is a good thing.
2. I think most would agree that ALL of our lives are “terminal”, in our present state at least. Even if Joseph’s life turns out to be shorter than yours, for instance, that does not necessarily make your life worth more than his. Your possibly longer life does not give you the right to stomp on his face of personal human rights which he retains even with a shorter life (if not more so). Your possibly longer life does not give you a right to try to prevent him from having medical interventions that would be freely given to you without any controversy at all as a non-disabled person. You may not be meaning to, but you are sounding like you are prejudiced quite badly against profoundly disabled people. Please understand that there could be another side that you are not seeing. It will help you if you do. It will help you personally, as well as help you stop inflicting unfair pain on this family. YOU are causing suffering at this time.
3. I don’t know of the family ‘making money off of him’ at all, at least not up to this point. In fact, as far as I know I would tend to assume they more likely lost considerable amounts of money as is often if not almost always the case when parents dedicate so much of their lives to being with their sick children in a hospital for so many months. I’ve seen this multiple time in cases, and I know it can be utterly devastating financially. Please have empathy for this family instead of judging them in areas that you apparently have no actual knowledge about. Try to have empathy for them, please. Just try it, for five seconds. Real human kindness empathy. Do that and you will be inviting yourself into possibly a wonderful state of being that you might not have experienced for a while. Please try it, just for five seconds; real human kindness empathy for this family that loves their child and needed him to be saved so he could be home with them. They just wanted to take him home.
More generally, please stop dwelling in the realm of untruth. Untruth is so harmful to goodness in this world. Every bit of untruth that is left in place takes away space in this existence for better things. Go to the light; avoid the lies. Truth is so much better.
I am a Canadian and this is beyond embarassing. The healthcare here is an absolute joke. If I get sick I am heading south to the USA.
@ various posters very broadly criticizing the Canadian healthcare system:
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There are plenty enough deficiencies in our Canadian healthcare system to last many years of explication and corrective measures. I don’t doubt that. But, unfortunately, part of the same goes for the United States in the privatized system in which some people are literally dying in the streets because of not being able to afford private health insurance. The deficiencies on both sides of the border bring shame to both countries.
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Having said the above, here are some impressions of potential interest to some of you which I have gleaned over years of study on the subject from quite a number of ‘ground zeroes’ that I have had the unfortunate experience of being immersed into:
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1. The kind of wrong things we observed being done against Joseph Maraachli and his family do in fact occur also in the United States, though not in every lifesaving-function department or every healthcare facility, and evidently not to the same degree overall as occurs in Canada.
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2. Regarding healthcare access for full trisomy 13/18 neonates (a particularly vulnerable group of disabled babies), some recent tentative statistics I’ve derived suggest that such disabled babies are perhaps four to ten times more likely to survive infancy in the United States than in Canada. That is a very dramatic difference in survival rates considering that _both_ countries have approximately equal lifesaving _capacities_ in the medical treatment technologies, personnel, training, and facilities available to these children. So this would mean that, for such kinds of babies at least, the present US system works far better in their favor as compared with the present Canadian system. But, nevertheless, terrible things like what happened to Joseph do in fact happen in the present US healthcare system even if to a lesser degree.
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3. It is very apparent that many ‘typical’ or poor Americans who died or experienced harmful sequelae due to lack of adequate health insurance would not have died or experienced those sequelae had they lived in Canada where even very poor people generally have enormous access to extensive medical services. This, however, is evidently not the case for disabled newborns in Canada, per point #2 above, who do in fact encounter massive inequitable rationing strategies. For the average person, therefore, the Canadian system appears to offer more consistent access to quality healthcare; whereas for certain vulnerable groups like disabled neonates the reverse appears to be true. One of the great myths in the national healthcare debate is that any one system is better or worse for everyone. But that assumption is not true when comparing the US and Canadian systems. The current Canadian system may very well be better for the average person, and the current American (privatized) system may very well be better for a minority represented in certain vulnerable patient groups, like disabled babies.
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4. A key difference between the American and Canadian systems, which I have found to exist and yet not to be recognized/used effectively by any politician, is the fact that the Canadian system in fact blurs accountability channels to a much greater degree with virtually a complete lack of arm’s length relationships between the provincial healthcare budget providers and the provincial justice/enforcement budget providers. In fact, in the Canadian system these budget providers are all the same entity! That is just stunning if you stop and think about the ramifications: If you have a complaint about injustice or crime in the healthcare system, you have to go to government agencies that are paid by the very same hand that also pays the judges and the police and the coroner. So in effect the accused also to a significant degree gets to be their own judge and executioner! This is insane. With such conflicts of interest and solely non-arms-length relationships built right into critical ‘accountability’ channels, that makes it just “a legal system”, not “a justice system” – because impartiality and therefore accountability is phenomenally blurred and compromised. That’s what you are heading for in the US with the adoption of the present-form nationalized healthcare legislation. At least in a US privatized system there is generally – at least technically – an arm’s length legal relationship between the healthcare-dollar-providers (private enterprise) and the justice/la- enforcement-dollar-providers (government). If you Americans think that nationalized healthcare’s blurring of those accountability channels like what is done in Canada won’t bring harm to certain vulnerable patient groups in the US, you are dreaming. We in Canada have had now about 52 years of experience in this ‘nationalized’ (provincialized) healthcare business, and we are still reeling from the terrible consequences of these blurred accountability channels; imperfections in the system that are still not being weeded out. In fact, it is only getting worse, and more *brazen*, as exemplified in the utterly morally ridiculous treatment of baby Joseph and his family by the Canadian hospital system. It appears to me that Americans, under “Obamacare”, rather than making a completely new and better hybrid form of healthcare are instead simply copying much of what we have done in Canada for over half a century – including our stupid or immoral mistakes as a country in this area of law and order. Instead of learning from our mistakes, Americans are largely just copying them. Instead of inventing a completely new way of administering and paying for healthcare, they are just replicating much of both the good AND the bad from our Canadian system. You are AMERICANS! Innovate!! Do not simply follow; do something new, whether you fix the privatized healthcare system or adopt some truly _new_ form of nationalized healthcare… just INNOVATE and do better than we did so far. You, Americans, stand now on the crossroads of change in history in how healthcare will be delivered to your citizens. And this will be an observed model for the world as well. Stand at these crossroads with the _insight_ and _humility_ to learn not only from Canada’s success in healthcare but also from Canada’s failures in healthcare. And one of Canada’s failures in healthcare is the utterly reprehensible and immoral outcomes for certain vulnerable groups like disabled babies in our country – the easy targets of inequitable rationing of healthcare dollars. Shame on Canada for what this country largely does to Canadian disabled babies. Double shame on the United States if you ignorantly or irresponsibly follow in those very imperfect footsteps. Do better than we did as a country. Be smarter. Even your President, who is bestowed with much intelligence of some important forms, needs to apply that personal capacity of his to intelligently and also morally protect these vulnerable groups in his Obamacare ambitions. I do not believe he is doing so; I do believe he is capable of doing so. Encourage your President to do so. If he somehow manages to extend his valid and viable sense of civil/human rights for African Americans to also now include civil/human rights for other vulnerable groups as well, in other unjust situations – such as disabled babies in need of lifesaving healthcare which they are often denied by hook or by crook to alarming degrees in other countries – then he will indeed become a great President in this regard. Help him; you are his countryfolk. He must listen. If you tell him well, he _will_ listen. Tell him well, and you will be saving lives of innocent children in future. The number of T13/18 kids might be relatively small as a population segment, but their rights are still one of the key next frontiers in the development of civil/human rights in society, both in America and beyond. If we as a society can so discriminate against these vulnerable, easy-target little ones, then we are a shame in the eyes of objective history and that evil will spread beyond murderous injustices committed against these children. As a wise American once said, “injustice anywhere is a threat to justice everywhere”. But if we as a society instead determine that we _will_ find a way to be able to afford to be ethical, as a society, even towards these voiceless little ones among us… then we will shine. You can be a bright light in history. And that brightness will spread to other areas of our society. You just try it and see what happens. The trend to darkness could lift, way beyond these children’s lives. It is a good thing to fight for them; good for everyone who stands for righteousness; for full, true equality and wholesome freedom. The results will go way beyond the direct moral benefits to these children. Way beyond.
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5. There are potential strategies that could be applied to nationalized forms of healthcare that might mitigate the inequitable rationing that otherwise stands to occur in a nationalized system that blurs accountability channels with its plethora of non-arms-length relationships. When I spoke in Washington in 2009 on this subject, in part under Congressional invitation, I was impressed to encounter at least two Members of Congress, at least one Senator, and also a Senator’s official Legislative Assistant who showed genuine interest in the possibility of innovating an American nationalized system in a particular manner. What was impressive is that these are the only ones I spoke to directly, and yet there was a consistent grabbing of attention among all of them. I think there is real potential in persuading your lawmakers in the United States of America, if you speak to them in larger numbers. Back in 2009 what I proposed to them is that if you go national, make sure you ACTIVELY build specifically into your new legislation at least the following two components: (a) the specific, identifying NAMING – right within your legislation – of the specific vulnerable patient groups (e.g., disabled neonates and retired elderly) that are more susceptible to inequitable rationing as demonstrated in other countries’ socialized-medicine models), and (b) special protections specifically legislated to be in place to actually protect those vulnerable patient groups. This is not brain surgery; almost anybody can instantly understand these principles: (a) name the people who are vulnerable, and (b) make laws to protect them specifically. It is so simple! Yet it is so _not_ being pursued from what I understand of the proposed nationalized healthcare legislation in Obamacare. Why not? Make your lawmakers (including Republicans) wake up to the fact that the mere passive _absence_ of discriminatory language in the legislation will not prevent discriminations against disabled babies and retired elderly. Rather, you need to incorporate ACTIVE deterrents and countermeasures INTO your actual healthcare legislation so you don’t fall into the same immoral-inequitable-rationing-inducing policies that Canada has fallen victim to over the past 52 years with our ‘nationalized’ healthcare system. Do not let your leaders implement new healthcare legislation without at least those two legislative components, or you will likely see how widespread the practice of inequitable rationing of healthcare can become against certain vulnerable patient groups. Watch how much crime will happen in your healthcare system when there are inadequate checks, balances, deterrents, and countermeasures in place to specifically and reliably protect those particular vulnerable groups. If you let the accountability channels get blurred with no compensating measures, you will get a disaster of inequitable rationing for some vulnerable groups. I am sure of this; the predisposition already exists even in the current privatized system, so imagine how much worse it can get.
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So for what it is worth presenting that here in this venue – maybe much; maybe not at all – I hope Americans learn that there is a way out of many of the worries and vulnerabilities. Just innovate, with a moral and equitable view. So much trouble can be prevented in the US’s future this way.
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