Connie Yates and Chris Gard were finally being blessed with their first child. When little Charlie was born, the happy couple believed that their prayers had finally been answered. Sadly though, fate can be cruelest when it’s blessings are but a farce.
Charlie Gard was sick, so sick in fact that the hospital where he was being treated believed him beyond all hope. Then, out of nowhere, his parents saw a ray of hope. Charlie could be cured…only there was a catch…
First Time Parents
Little Charlie Gard came into the world in August of 2016. When he was born, he was as healthy as any other little baby in the ward. Indeed, most of his first few weeks seemed quite normal for his first time parents, Connie Yates and Chris Gard.
Then one day, his mother noticed that the little boy seemed to be getting weaker. Unsure what to do, they took him to their pediatrician. Unfortunately, this only served to raise more questions. Something was indeed wrong with the infant, the doctors just weren’t sure what. They’d have to do some more tests…
Not Going Home
After an exhaustive series of tests, Charlie’s parents finally had a diagnosis. The little boy was diagnosed with a genetic mitochondrial disease, one which effectively saps energy not only from the muscles, but also from the internal organs. From the time he was eight weeks old, Charlie Gard would have to remain in the hospital.
Charlie’s mother and father remained at his side the whole time, but despite their attentions and prayers, he continued to weaken. Soon he couldn’t even open his eyes to see them. He wouldn’t move, he couldn’t cry, frankly, they didn’t even know if he was in pain or if he was suffering at all…
Only the 16th
Charlie’s condition is so rare that it is believed he is only the 16th person in the world to be diagnosed with it. Doctors in Great Ormond Street Hospital didn’t know how to treat him or to ease his suffering or deterioration. In fact, the only place that did seem to have any idea how to heal the boy, was an American hospital.
One Last Hope
That’s right, Doctors at an unnamed American hospital have seen this disease before and when they learned of Charlie’s case, agreed to attempt nucleoside therapy to treat him to try and repair his DNA. The therapy would give the boy a compound that normal people produce naturally and has been successful in patients with similar afflictions. Still, it wasn’t a sure thing…
An Immense Amount
In addition to the experimental nature of the treatment there was also the immense amount of money Charlie’s parents would have to raise in order to get themselves to the United States. The family would need to raise $1.5 million to pay for the Air Ambulance to take him to America.
At the same time that the parents were trying to fathom how in the world they’d raise so much capital, the clock was apparently ticking on Charlie’s time in Great Ormond Street Hospital. His doctors have come to the conclusion that even with treatment, Charlie’s survival is not guaranteed, and they want to switch off life-support…
Not His Best Interest
While it seems cruel to us, the doctors at Great Ormond Street believe that taking Charlie abroad for such an experimental treatment is not in the baby’s best interests. They have even gone so far as to appeal to the High Court for permission to withdraw treatment and to block his parents from taking him to the US.
To What Benefit?
Katie Gollop QC, who is acting for the hospital, went on to add: “There is no dispute about the diagnosis, what is under discussion here is whether the treatment that is being considered by the family and has already been considered and not adopted by Great Ormond Street is a possibility at all and to what benefit.” And it’s hard to argue with doctors on such an issue…
The One Chance
At the same time though, how can you tell a parent that their child has no way to survive and that their one chance for survival is a self-indulgent, wildly-expensive pipedream that is doing more harm than good? Nevertheless, Chris Gard and Connie Yates were not about to give up on their son.
Not Giving Up
Connie Yates, Charlie’s mother came out and said: “We just can’t let our baby die when there is something that might help him. We won’t give up on him because he has a rare disease. He deserves a chance and he deserves a life as much as anyone else.” They say they aren’t fools, they understand the treatment may not work…
“We understand that rare diseases don’t get enough funding for research but why should that be a reason for a child to die?” she added. They believe this so fervently that they have even secured a lawyer to fight the hospital’s block. They believe their son is doing much better than the hospital believes.
Ms. Gollop, of the hospital argued that the couple is simple deluding themselves. “It isn’t straightforward in a case like this when you have a child in a condition he is in and he can’t cry and is deaf. ” The judge assigned to this unusual case is having just as much trouble deliberating as you’d expect…
To Judge a Life
Justice Nick Francis, the judge assigned to Charlie’s case, described it as “the most tragic situation.” He obviously respects the boy’s parents’ devotion to their son and feels for them, but still has to weigh all the facts before making a deliberation, especially because the hospital has scientific fact on their side.
Weighing it All
Ultimately, the judge’s part in this case was to balance the risk of pain and suffering to Charlie against the slim possibility that treatment in America might heal him. It wasn’t going to be easy, but the judge had a month to make his determination. Unfortunately, the point became moot soon enough…
In July of 2017, Connie Yates and Chris Gard withdrew their bid. Charlie’s disease had progressed too rapidly for treatment to be a success any longer. His health had declined to the point that all his parents could do was wait for the end. On July 28th, 2017, Charlie Gard passed away.
Was it Right?
The questions raised by Charlie’s death are perhaps as important as the ones raised when he was alive. Had the hospital done all they could to help the baby, or had they slacked off when they knew they couldn’t save him? If the judge had made a decision sooner?
Public Health Issues
The situation has brought up a number of issues both in America and across the Pond. Many Brits are of the opinion that the public health system contributed to Charlie’s ultimate demise and many American’s believe the same, that a system like the that used in the United States could have given little Charlie the chance he needed to survive.
A Better Way
Tales like this happen all across the world. In places where there is little to no healthcare, or where healthcare is woefully underfunded and understaffed, it happens even more often. Until we find a way to provide all people with the same standard of healthcare, children will continue to suffer. I don’t know what that better way is, but here’s hoping we find it soon.