Charlie Gard in a System of Death
Charlie Gard is almost one year old. Charlie has mitochondrial DNA depletion syndrome (MDDS). This condition is rare; however, Charlie's parents love him and wish to protect his life. Charlie's doctors have preserved Charlie's life. Charlie's brain and muscles have been affected.
Charlie is on a ventilator. A ventilator pushes air with oxygen into Charlie. Yes, this mechanical movement of gases is necessary for Charlie but that is all that the ventilator does. Charlie's lungs, heart and circulation do the rest. They function to absorb the oxygen, circulate blood with oxygen to all of Charlie's organs, tissues and cells. The blood picks up the waste product, carbon dioxide, and delivers it to Charlie's lungs. The ventilator does not and cannot make the body "respire" i.e., exchange the oxygen and carbon dioxide for the organs, tissues and cells. For carbon dioxide to get out, Charlie's lungs and breathing muscles must first have the ventilator push the air in. Then Charlie's lungs and breathing muscles can function effectively to allow movement of the air with carbon dioxide to go out of Charlie. The ventilator does not exhale. The ventilator does not respire. The ventilator does not make the heart beat. It is in the living Charlie that these things occur. The ventilator simply moves the air into the person who needs help or cannot do this movement on their own.
Charlie is alive because doctors, nurses and respiratory therapists are providing treatment and care to Charlie. Charlie also has a feeding tube to provide water and nutrition to Charlie. The ventilator and the feeding tube are commonly used in modern medicine. Pliable plastics and electronics are used in the ventilator. Does the ventilator and feeding tube cause discomfort and suffering for Charlie? No. After insertion, Charlie, like most patients on a ventilator, has become accustomed to the endotracheal tube and the feeding tube.
Charlie's parents want Charlie to live. This is normal behavior for parents. The doctors recommend that Charlie's life support be stopped. Charlie's parents do not wish to have Charlie's life shortened or his death hastened. Lawyers for Great Ormond Street Hospital have been arguing in the legal system to end Charlie's life. The UK courts ruled that it would not be in Charlie's "best interest" to receive any continued or new treatments. Note that Charlie's parents wish for the best treatment for Charlie, but the medical and legal systems conclude that it would not be in the "best interest" of Charlie. This is not simply semantics; it is brainwashing to use words in this way. The ordinary person does not readily realize what is happening.
Tools like a spoon or a feeding tube may be used because the person may be weak or unable to put food into their mouth, but neither these tools nor even the food itself can make the body digest and nourish the organs, tissues and cells. Likewise, the ventilator is a tool that brings the air into the person whose living body does the rest. We all need air, food, water and a way to eliminate waste products to live. Charlie just needs this mechanical help for the air and food to go in, but his living body does the rest.
The general public expects treatment if they go to a hospital. However, Charlie's parents have found themselves in a System of Death. In the United Kingdom, it is well-known that socialized medicine is in place. In the USA, the Secretary of Health sets the rules; doctors, hospitals and private insurance abide by the same rules. The collection and distribution of finances is varied but the control of doctors is very similar. The significance of control of doctors through CMS, which is Medicare and Medicaid, is then a major influence for payments by private insurance companies. This is not commonly known.
President Trump and Pope Francis have expressed concern and support. Such support is gratifying but President Trump and Pope Francis cannot know the System as well as Charlie and his parents have found it to be.
I have participated in the treatment and care of Jahi McMath. Jahi's mother wanted treatment and care for Jahi. Jahi was in a children's hospital in Oakland, California in 2013; a death certificate was issued on December 12. The doctors, nurses, and administrators referred to Jahi as a dead body. They would not call her by her name. Miraculously, a hospital in New Jersey agreed to accept Jahi as a patient. Jahi has had her 14th, 15th and 16th birthdays. Jahi lives at home with her family in New Jersey. Jahi cannot go back to California because she has a death certificate in California. How long will it take, if ever it does happen, that the legal system will admit that Jahi is alive in New Jersey?
Israel Stinson was one-year-old infant when he had an asthma attack in Sacramento, California. Doctors said that he was "brain dead." No doctor or hospital in the United States would treat Israel. He was transferred to Guatemala where tracheostomy and gastrostomy were done. Israel received thyroid medication and proper nutrition in Guatemala. Doctors refused to accept Israel back to the United States. Eventually, Los Angeles Children's Hospital agreed to accept Israel to their hospital. After admission to LA Children's Hospital, doctors refused further evaluation by CT scan, MRI or consultation from outside neurologists. Israel was alive when he went to Guatemala and when he arrived back in the USA at LA Children's Hospital. The legal system and medical doctors in California stopped Israel's ventilator, food and water. Then Israel was truly dead.
Mirranda Lawson was a 2-year-old girl who choked on popcorn. Within a few days doctors in Virginia told Mirranda's parents that she was "brain dead" but wanted to do the procedure called an apnea test. Note that this is not a test for sleep apnea; it is a procedure that takes away the life supporting ventilator for 10 minutes or longer. Even if oxygen is given without breathing support from the ventilator, carbon dioxide and acids increase. This is not told families. An apnea test could not benefit Mirranda and possibly could result in death. Nevertheless, the judge in Virginia ruled to do the apnea test. The ruling was immediately appealed to the Virginia Supreme Court. The legal system appointed a Guardian for Mirranda. It was so sad for me to observe a system that appointed another attorney to be Guardian for Mirranda and did not allow Mirranda's mother, father or any of her 4 siblings to be her Guardian. Mirranda's parents also asked for tests to evaluate thyroid function. Doctors admitted that she was likely to be low on thyroid hormone, but refused testing and treatment for this. Adequate amount of thyroid hormone is essential for healing and living for all of us. Doctors in Virginia refused to do a tracheostomy and a feeding tube so that Mirranda could be cared for at home. Before the Virginia Supreme Court would hear the arguments, Mirranda did die in the hospital, about 6 months after choking on popcorn.
Now we hear about Charlie Gard in England. Charlie needs a tracheostomy and gastrostomy so he can be treated at home. Tracheostomy is necessary whenever an endotracheal tube has been in place about 2 weeks. A feeding tube, commonly a PEG (per cutaneous endoscopic gastrostomy) tube, is relatively simple to insert and more easily managed than a feeding tube inserted through nose or mouth. Yes, by all means, do the investigations and treatments of the rare condition of Mitochondrial DNA Depletion Syndrome (MDDS). Hurrah, if it is successful. If it is not, let Charlie be treated with a tracheostomy and a feeding tube so he can be at home. All of this can be done in England. He doesn't need to go to USA or Italy unless doctors in England refuse to treat Charlie. If doctors in England would have treated Charlie, the legal system might not be involved. But a doctor, a medical system and a legal system are needed to treat Charlie. Jahi, Israel, Mirranda and many others find themselves in a System of Death that is based on the mendacity (deception, lie) of "brain death." Hospice, Comfort Care, Palliative Care, and Futile Care Policies have followed and are part of the System of Death. All of these include less treatment, little or no care, and drugs for what is interpreted as suffering that may hasten death and shorten life.
We thank President Trump, Pope Francis and all those concerned about Charlie. We stand with Charlie's parents wishing the best treatments for their baby. We hope and pray Charlie will be treated with a tracheostomy and feeding tube (PEG tube), specific medications, ventilatory and nutritional support so that Charlie can be at home with his parents.
Dr. Paul A. Byrne is a Board Certified Neonatologist and Pediatrician. He is the Founder of the Neonatal Intensive Care Unit at SSM Cardinal Glennon Children's Medical Center in St. Louis, MO. He is Clinical Professor of Pediatrics at University of Toledo, College of Medicine. He is a member of the American Academy of Pediatrics and Fellowship of Catholic Scholars.
Dr. Byrne is past-President of the Catholic Medical Association (USA), formerly Clinical Professor of Pediatrics at St. Louis University in St. Louis, MO and Creighton University in Omaha, NE. He was Professor of Pediatrics and Chairman of the Pediatric Department at Oral Roberts University School of Medicine and Chairman of the Ethics Committee of the City of Faith Medical and Research Center in Tulsa, OK. He is author and producer of the film "Continuum of Life" and author of the books "Life, Life Support and Death," "Beyond Brain Death," and "Is 'Brain Death' True Death?"
© Paul A. Byrne, M.D.
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