Charlie Gard

            My VIP for this week is Charlie Gard, the terminally ill baby in Great Britain. He died last week just one week before his first birthday. His parents confirmed his death on Friday from Mitochondrial DNA Depletion, a disease that causes “progressive brain damage and muscle weakness.”

            The parents – Chris Gard and Connie Yates – fought a legal battle for five-months for the right to take their baby out of the hospital for treatment elsewhere. The hospital took the fight to the Court, and the Court ruled for the hospital. The court battle was about who had the right to decide on treatment for Charlie – the parents or the government.

            Charlie’s parents raised $1.7 million to pay for experimental treatment for his rare genetic disease in the United States. An American neurologist examined Charlie and suggested that treatment could help him. However, too much time had been wasted in the court battle. When tests proved that Charlie was past the point of help, the parents withdrew their legal challenge. When they asked for the opportunity to take Charlie home, the Court again ruled that he could not be allowed to pass away at home. Charlie passed away in a hospice facility in London.

            This writer sends condolences to the parents and questions the actions of the hospital and court. This question must be asked: Why were the parents denied the right to choose treatment for their son? It appears that the law in Great Britain does not bestow any parental “rights,” just parental “responsibilities.” This is the reason that the law will allow a hospital to override the wishes of parents for treatment “if it’s in the child’s best interest.” The hospital believed that the treatment would cause Charlie to have prolonged suffering and refused to allow him to be transferred. The court in Great Britain ruled for the hospital.

            The next question must be: Could a similar situation happen in the United States? The short answer is “yes” because “similar cases happen all the time.” However, it is unlikely to happen here because most cases “tend to be resolved in favor of parental rights,” according to Dr. John D. Lantos, director of Bioethics Center at Children’s Mercy Kansas City. 

            Dr. Lantos gave an example of a thirteen-year-old girl who went into a hospital for a

“routine tonsillectomy” and suffered “cardiac arrest and excessive bleeding” after the surgery. She was put on life support and declared to be brain dead legally. The parents requested the court to allow them to take her elsewhere for treatment. Even though the court agreed with the doctors that the girl was brain dead, they allowed the parents to take their daughter for other treatment with expenses to be paid by the parents. The article said that the girl is still alive, but it did not state the girl’s current condition.

            According to the doctor, the more common situation in the United States when courts overrule parents is when parents refuse blood transfusions for their child for religious reasons or refuse the standard and proven treatment for a problem. Then the court takes action to protect the child. In other words, American parents have the discretion to make decisions in behalf of their child as long as their decisions are in the best interest of said child. This is basically the same reasoning as in the Charlie Gard case.