Everybody’s talking about Donald Trump, Jr. . .so let’s talk about something else for a bit. There’s a baby on life support in Britain. If the life support is removed, he would quickly die. So the current discussion is when someone should be allowed to die. SEE UPDATE at the end of this story.
It’s another case like Terri Schiavo, the Florida woman who was in a coma for fifteen years as relatives split about whether life support should continue. There were 14 court appeals and many groups weighed in, including right-to-life, right-to-die, and disability rights groups.
The current case is not as clear cut. Typically, liberals line up with “die with dignity,” while conservatives support life, regardless of quality of life. In this case, Pope Francis and Donald Trump are on the same side (maybe for the first time, ever). In fact, Pope Francis has offered to give the baby a Vatican passport, to allow him to go to Rome for experimental treatment there.
The Pope is reportedly considering giving terminally ill Charlie Gard a Vatican passport so he can be treated at its hospital. . .
Since then Mr Trump is among those to have spoken out about the case, tweeting: “If we can help little £CharlieGard, as per our friends in the U.K. and the Pope, we would be delighted to do so.”
Legally, in Britain, parents do not have 100% control of their child, so a government guardian has been assigned to determine what is best for the baby. That guardian has decided that the baby is on a one-way trip to pain and disability, and to force him to continue by artificial means is just cruel. It should be noted that parents in America are sometimes overruled, as well, for example, when parents don’t believe in any medical treatment. A judge can then decide that a child’s welfare is more important than parents’ religious beliefs.
A British court gave the parents 48 hours to prove that it would be good for the baby to continue.
Mr Justice Francis ordered Charlie’s parents to provide new evidence that would show an untested therapy would be effective. The High Court judge gave the couple until 2pm on Wednesday to produce the material ahead of a further hearing on Thursday morning to decide the 11-month-old’s fate.
In a seeming swipe at the US president, who posted on Twitter a week ago: “If we can help little #CharlieGard… we would be delighted to do so”, Mr Justice Francis told the court: “I have to decide this case not on the basis of tweets but on the basis of clear evidence.”
The hospital insists Charlie’s body is growing but that his brain is not, proof they claim that the little’s boy’s condition is deteriorating and that he has suffered irreversible brain damage.
Here are the eight questions the British court will have to decide.
• Is Charlie in pain?
• Is the fight to keep him alive prolonging his suffering?
• Can his quality of life improve?
• Does Charlie have irreversible brain damage?
• Does Charlie open his eyes?
• How does Charlie’s case affect other children being treated at Great Ormond Street Hospital?
• Who will care for Charlie if he does have treatment?
• How does Charlie’s case affect other children being treated at Great Ormond Street Hospital?
What is the disease? ABC News offers the details.
• What is Mitochondrial Depletion Syndrome (MDS)?
MDS is one of a suite of rare disorders that affect the mitochondria –- often described as the tiny powerhouses of the cell. Certain genes ensure that these mitochondria are healthy and produce the energy the cells need. Genes come in pairs, one copy comes from the mother and one from the father. When a baby has MDS, it means that both copies received from the parents for this particular gene –- the one that keeps mitochondria healthy –- are defective. The result is progressive muscle weakness and devastating multi-organ damage.
• How Rare Is It?
This disease is very uncommon, with perhaps fewer than 100 cases in the range of related disorders reported worldwide, according to a 2014 study.
• What Are the Signs and Symptoms of MDS?
Initially, development may appear normal; however, before these children reach 24 months of age, they usually start exhibiting certain signs of muscle weakness — for example, weakening of eye muscles leading to droopy eyelids and facial weakness. These children may also exhibit signs of organ failure, such as brain and nervous system problems leading to seizure activity, hearing loss, liver damage and difficulty walking, talking, and swallowing.
• What Is the Prognosis for Children with Mitochondrial Depletion Syndrome?
The prognosis, unfortunately, is very poor. Many children with this condition begin having lung muscle weakness early in life. Normally, this progresses rapidly to respiratory failure and death within a few years of onset. The most common cause of death is infection of the lungs.
The parents say that a New York hospital treats patients with similar diseases, but the hospital admits that none of them have had the “rare inherited disease – infantile onset encephalomyopathy mitochondrial DNA depletion syndrome (MDDS).”
What is unusual about this story is that Fox News’ conservative contributor, Charles Krauthammer, has weighed in on the side of the British hospital. It was an interview on Fox, with Tucker Carlson.
Conservative commentator Charles Krauthammer said Monday that efforts to keep 11-month-old Charlie Gard alive are part of a “cruel hoax” by some in the medical field.
During an interview with Fox News host Tucker Carlson, Krauthammer said that while Gard’s parents have the right to decide whether their child continues to receive treatment, they are wrong to prolong his life as he battles a terminal illness.
“The merciful thing to do … would be to remove the tubes and allow the child to die, and to end the suffering,” Krauthammer said.
Krauthammer suggested doctors were insulating a “cruel hoax” on Gard’s family given that the child’s illness is “utterly incurable.”
“I think this is a cruel hoax, this holding out of hope for a disease that is utterly incurable,” Krauthammer said.
“There are people, this happens every time you have a terrible case like this, some hospital or doctor will claim he’s got some kind of new treatment. I don’t believe a word of it,” Krauthammer said.
“If I were the judge, come in, has to make a ruling, I would allow the child to die,” Krauthammer said. “He can’t see, he can’t hear, he can’t speak, he can’t swallow, and he has no control, he can’t move, and he has terrible epilepsy.”
Krauthammer speaks with some authority, as he suffered a diving accident in 1972, was paralyzed, and was dependent on a breathing tube.
KRAUTHAMMER: “I think there are two approaches here, and I don’t think it has to do with life in the abstract. It has to do with little Charlie and his own welfare. If I were the judge that comes in and has to make a ruling, I would allow the child to die.
He can’t see, he can’t hear, he can’t speak, he can’t swallow, and he has no control to move, and he has terrible epilepsy.
I have had a breathing tube in [me] for weeks on end as he does, and it is a life of agony and great distress. I can protest as an adult. He can’t.
UPDATE—UPDATE—UPDATE
There was a new development. Two hours into today’s (Thursday’s) hearing, the parents stormed out of the courtroom.
Yates interrupted [The judge, Mr Justice Nicholas Francis] as he said that the parents had said they would not want to prolong Charlie’s life in its present state, only if there was hope of improvement. “I never said that!” she exclaimed from her seat behind her barrister.
The judge attempted to clarify that one or other of the parents had said it, but both rose and left the court. Francis offered to stop the hearing until they returned but it continued for a short time before breaking for lunch. . .
Francis told the court it was clear that the hearing would not finish Thursday, adding that “if there is important new evidence that suggests my decision should be changed then I will change it.”
It’s clear that the hearing will not finish today (Thursday), but the parents’ outburst did not help them. They are saying that they would want a brain-dead being have his heart kept beating artificially, even if it meant pain and no chance of survival without being tied down.
