I cannot imagine what it must be like for any parent to hear that deadly word - futile - and have that mean to your medical provider and to the state that you are now powerless to fight for your child.
“Futile” has become a loaded word, no longer determining whether a treatment is useful, but rather if a person is worthy of treatment. The subjectivity and false finality of this word has resulted in the premature deaths of so many. Now, that word will lead to the death of baby Charlie Gard.
Today, Charlie Gard’s parents announced that they are ending their protracted legal fight for Charlie. Too much time has passed for him to have any chance of successful treatment. Here is their full statement.
This morning as I was driving from a meeting, I reflected on this tragic situation. For me, my family has been lucky – we have never had to fight for our kids’ basic right to live or receive treatment. Maybe we have disagreed with our pediatrician a couple of times over minor things such as whether or not to supplement our kids’ diet with formula or exclusively breastfeed. We knew our pediatrician had the best in mind, but if we as parents ever disagreed, all we ever had to say was no - and that was the end of it. Otherwise, we knew we could find another provider.
Because, at the end of the day, they are our children. We have a say.
However, in my work at Wisconsin Right to Life, I know of so many parents who fight so hard for their children with special needs to receive basic care. Their kids are much like Charlie, and are too often denied not only experimental treatment, but also basic food, water, and ordinary care. The right of these parents to transfer their children to a different provider is basic and essential, and very often a matter of life or death.
Charlie’s family is living through the unimaginable for any parent, whether our kids are medically fragile or comparatively healthy. When he was given the “futile” label, they could not transfer him to a different provider. Instead, they were forced to take their fight to the judicial system, wasting every crucial minute in court instead of working to get Charlie the care that he needed. Now, tragically, it is too late for him.
My heart utterly breaks for Charlie’s parents. A parent’s job is to protect their child. The UK’s court system, government, and health care system were all obstacles to Charlie’s parents' ability to do their job, and now Charlie will lose his life because of it.
I applaud Charlie’s mom and dad for their fight. For Charlie’s sake, his family’s sake, and the sake of so many families like them, we need to share his story. The more we push back against the culture of death and expose it for what it is, the less likely it is that a family will ever have to suffer such a needless battle for their child. We can end the deadliness of the “futile” label, and ensure that every parent has the right to fight for their children.