It is with great sadness that we watched the tragic case of baby Charlie Gard play out to its awful conclusion.
The infant with a rare disease died in a London hospice after British courts prevented his family from bringing the baby to the U.S. for experimental treatment that may have saved his life. In the end, the court ruled to discontinue treatment, remove him from life support and let his life slip away in hospice — instead of at home with his parents.
This case resonates with so many, with debate over end-of-life care.
This case resonates with me for another reason completely — as the parent of a medically complex child. I’ve made no secret of it over the years that my daughter suffers from heart problems and a debilitating neurological pain condition. My family hopes that sharing our story brings about awareness and education to prevent tragedies and foster understanding.
Through our struggles, we have joined support groups linking us to other parents with similar issues. And while I’ve heard many people locally conjecture that the Charlie Gard case couldn’t happen in America, I’m here to tell you how wrong you are.
I want to share with you a true story of a woman I will call Jane, which of course isn’t her real name. Jane’s daughter was ill, exhibiting signs of the same debilitating nerve pain condition my daughter has. She had some other issues as well which are common with children with Complex Regional Pain Syndrome. Jane was working hard to get her medical treatment, but where she was located in a southern U.S. state, there was no help.
Jane’s daughter was taken from her by a well-meaning Child Protective Services, who accused Jane of Munchausen by Proxy. They claimed she was making her child sick, and separated her from her parents.
Jane, distraught and thinking that her perceived influence over her daughter was preventing her beloved child from getting medical care to relieve her terrible suffering, took her own life. Sadly, this so shocked the medical officials that they took a closer look at her daughter and realized Jane had been innocent. Her daughter finally got the treatment she needed.
And a beautiful soul is gone. And her daughter will likely live with guilt her entire life.
And for what?
As the parent of a medically complex child, and friends with hundreds of others, I can tell you that this sort of accusation is one of the greatest fears of so many.
My family is incredibly lucky we live in McKean County. We have had nothing but kindness and understanding from local medical professionals. Dr. V. Rao Nadella has been our strength, guidance and partner in this fight to keep our daughter healthy.
I cannot fathom the pain poor Charlie Gard’s parents are suffering. And I hope I never have to.
When you have an albatross like Complex Regional Pain Syndrome in your life, you develop a dark sense of humor about things. Without wishing this living hell on anyone, you think maybe someday, a celebrity will be diagnosed with CRPS. And then people will pay attention.
Look at what the tragic story of Lou Gehrig did to foster understanding for ALS. Or Muhammed Ali and Michael J. Fox for Parkinson’s Disease research.
Maybe if a silver lining can come out of the tragedy of Charlie Gard’s story, the next person to be diagnosed with mitochondrial DNA depletion syndrome will stand a chance at life.
Go with God, baby Charlie. Always in our hearts.
