Baby Charlie’s plight a test of compassion for us all
Baby Charlie Gard’s death sentence could be issued any day now following the hearing in London, his fate now in the hands of the English court. In case you haven’t been following the case, the 11-month-old London infant has a rare, fatal genetic disorder and has been in the hospital for most of his life. The Royal Court of Justice will decide whether his parents have the right to remove Charlie from the hospital and seek alternative treatments with doctors who say they are willing to help.
This obstruction by the courts and the hospitals sends a disturbing message to parents with sick children. Charlie is being treated like a criminal and not as an 11-month-old baby whose parents are hoping that he gets a chance — a chance to live. What is even more troubling is watching the hospital, which should be focused on the patient, argue in court that Charlie should be taken off the ventilator, more concerned with maintaining its institutional prerogatives and not allowing Charlie to receive cutting-edge experimental treatment.
Doctors, a hospital, and a court thus have been making decisions contrary to the parents’ desire to care for their child and seek help elsewhere. This case sets a dangerous precedent, one that is fundamentally anti-parent. This is one of those moments where we need to challenge our institutions on the rights parents have in deciding the future of their children.
Charlie’s parents have known the sorrow and pain of watching their son suffer in the hospital, but yet they refuse to give up hope. One American doctor is willing to take the challenge and provide a treatment for Charlie. The doctor told the court there was between a 10 and 50 percent chance that Charlie’s condition could significantly improve, and finally the courts are willing to listen to the doctor.
The authorities argue that Charlie when he is on a ventilator and his doctors don’t think that there’s much they can realistically do. My response is that Charlie’s life is worth it. His life matters as much as yours or mine.
The Rev. Pat Mahoney, a Christian human rights activist who is with Charlie’s parents, explained, “If the courts, judges and government bureaucrats are allowed to usurp parental rights, the fabric of our society and culture will unravel. This is one of the biggest of examples of institutions stripping the rights of parents.”
Maggie, the daughter of one of my closest friend, was born with a lifethreatening genetic disorder. The doctors warned her parents that she might not survive the birth. She was connected to all sorts of medical devices, including a feeding tube and tracheostomy tube. Maggie even went home with a ventilator.
The prognosis was grim, but the determination of her parents kept Maggie alive. Her parents would take turns going to the hospital while raising five children. It was exhausting, tough and challenging, but my friend would say that Maggie is worth it. No doctor predicted that she would ever eat or breathe on her own, but today Maggie, who is now three years old, has become more independent. She is off the ventilator, the trach and feeding tube. Like Charlie’s parents, Maggie’s parents never once gave up on their child.
I am blessed that my family is part of Maggie’s life. She brings great joy to our lives. She teaches my children about compassion, sacrifice and pure love. She also teaches us that pain and sacrifice are part of every human life, and learning how to deal with suffering is part of the human experience.
As Dr. Jerome LeJeune, a French pediatrician and geneticist who specialized in chromosome disorders, once noted, “The quality of a civilization can be measured by the respect it has for its weakest members.”
Institutions need to honor not only the parents’ wishes, but understand that they have a responsibility to protect the weak. Even the weakest among us have rights. Mercedes Schlapp is a Fox News contributor, co-founder of Cove Strategies and former White House director of specialty media under President George W. Bush.