The life of Charlie Gard

If you asked me 10 years ago my thoughts about the Charlie Gard case, I would have empathized with the parents.  Today, while still empathizing with them, I believe they were blinded by love and therefore unable to find the most compassionate resolution for their child.

Charlie Gard’s life ended on Friday in London, one week shy of his first birthday.  He has 150,000 Facebook followers and his name has been featured in internet and mainstream media outlets for sometime now. His GoFundMe page had raised 1.3 million pounds earmarked for experimental treatment.

Charlie was born with mitochondrial DNA depletion syndrome (MDDS). According to the BBC, this rare genetic condition causes muscle failure and progressive brain damage.  There is no treatment at this time and the prognosis in infants is negative, resulting in death.    In November 2016, Charlie began having difficulty breathing and was taken to Great Ormond Street Hospital were he was placed on mechanical ventilation.  Initially, parents Chris Gard and Connie Yates were in agreement with the hospital to attempt experimental treatment for the baby. Unfortunately in January 2017 Charlie suffered several seizures which caused severe brain damage and resulted in the hospital withdrawing its recommendation.   The result was a battle of beliefs on social media and in traditional media.

Ross Douthat of the New York Times gave a scathing and demonistic depiction of the British medical professionals and their inability to let parents decide the fate of their own child.   I wonder if Ross has ever lost a child.   I wonder if Ross has every spent nights as a nurse watching as a baby suffers from a life threatening disease.  Still, it is refreshing that we live in a society that allows these moral questions to be examined.

My position on the issue is simple, if your son is suffering it is time to let go.  I come to this conclusion from experience.  Ten years ago, I was 23 weeks pregnant, living in a European country when I was diagnosed with severe Oligohydramnios.   This simply means our baby had no amniotic fluid.   My husband and I were asked to make a life or death decision for our son.  No one should have to make such a decision. It is heart wrenching.  But to demonize the medical professionals is a mistake.  I can assure you every doctor, nurse, and receptionist we came in contact with was as distraught over the news as we were.   The best anyone can do is find out everything you can and then make a decision for the health and safety of the child.   For us, learning that our child would suffer, be unable to breath, and most likely live a week or two writhing in pain was too much to bare.   We had to put aside all of our beliefs, our hopes and dreams, and focus on one issue, doing what was best for our child.  I reiterate, I hope no one ever has to make such a choice.  It must be even more difficult when you have a healthy child for a few months and then he becomes ill.  The desire to fix him has to be unbearable.  This is why you have doctors, experts who can look at the situation and devise the best path forward for the baby.

Charlie’s parents loved him very much. They were willing to go to the ends of the earth to make him whole. Can they be faulted for that? No.

Due to his irreparable brain damage caused by the seizures, doctors on both sides of the Atlantic recommended taking him off life support and allowing him to pass with dignity.   A specialist from Columbia believed he may have had a treatment but once he examined Charlie, he too, felt it was to late. Should the doctors be faulted for wanting to end the baby’s suffering? No.

These are not easy decisions for anyone involved and I’m certain they didn’t come to conclusions lightly.  What I find troubling is the opinions generated loudly on social media and by journalists.   I’m troubled also by the money generated by the GoFundMe site.  Could that 1.3 million pounds have been better spent on research to help the next baby? Did the people donating money understand the facts?  Is the death of this child something that should go viral?

My memory of laying in my hospital bed with my husband beside me forces me to shout no!  Leave this little precious gift alone.  No more court battles.  No more invasive treatments.  No more pain for little Charlie Gard.

Now, let’s give his parents the space and privacy to move on with their lives.

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