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The Tragic Dilemma of Baby Charlie Gard

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By Susan Kuebler

First, no one, absolutely no one, can judge the actions of this baby’s parents unless they have had to face the same heartbreaking decisions themselves.  My heart breaks for them because I have.  It has been over 30 years now, but I know what they are going through. And I would not wish that experience on my worst enemy.

As a parent, you want to do everything possible for your child.  Take any chance that might be available. Risk any procedure. I distinctly recall telling the doctors, “Do whatever is necessary to save my baby. All I ask is that you keep me alive.”

According to the reports I’ve read, Charlie was diagnosed with an extremely rare congenital condition known as mitochondrial DNA depletion syndrome.  There are variant forms of this syndrome and Charlie suffers from the rarest form.  Without going into scientific, medical terminology in Charlie’s case this means that his body is not able to deliver energy to his lungs, his brain, and his arms and legs.

He has been hospitalized since last October.  He cannot breathe on his own, and his doctors have determined that he has suffered irreparable brain damage. There this no cure for his condition, but there have been some experimental drugs that might possibly help.  Sadly, nothing can be done to reverse brain damage he has suffered.

His parents have raised the money to bring him to the United States where experimental treatment is available. It should be noted that for Charlie’s condition, this treatment has not been tested on animals or humans. However, in Great Britain, the judges have sided with the doctors who say that Charlie has reached the “terminal stage” of his illness and should be allowed to “die with dignity.”

This troubles me, but on several different levels.  I strongly believe that the decision on continuing or withdrawing treatment should rest with the parents, not the doctors.  True, parents may be too emotionally invested to make a logical decision, but there is nothing logical about fighting for the life of your child.  It is woven into the very fabric of our DNA.  And even if the experimental treatment does not help or save baby Charlie, the lessons physicians learn from him might help other babies in the future.

On the other hand, there are thousands, possibly hundreds of thousands, of children around the world who would benefit from receiving medical care in the United States. Is access to this care limited to those who can afford it or to the high-profile cases that tug at our heart strings?  Every single day, in the United States and around the world, parents and doctors are faced with impossible choices.  When is it time to say “enough is enough” and to let nature take its course?  Is it ever time?

Now Donald Trump and Pope Francis have weighed in on the situation. While the Pope certainly has credibility in siding with the parents on this issue, don’t forget that Trump once withheld crucial medical help from his own nephew because he was fighting with his brother.

My son was put on a machine called ECMO (extracorporeal membrane oxygenation) which is essentially heart-lung bypass for newborns.  At the time, it was the option of last resort – used only when the alternative was death. Four children at the hospital where he was born with his condition had been put on ECMO.  He was the second to survive.  His path afterward was difficult and long, but he came through it.  He is my miracle.

But throughout our ordeal, our doctors made it quite clear that the decision on his care, his treatment, the procedures used, were ours and ours alone. They laid out the options before us but never told us what we should or should not do.  We chose to fight for our son and we don’t regret a minute of it.

But for those who might want to argue that our healthcare system in the U.S. is better than universal healthcare offered in Great Britain or other modern countries, let this also be a cautionary tale for you. My husband worked for a large retail chain that was self-insured.  When the final medical bills for our son came in, they didn’t fire him.  But they made his working conditions so untenable that he was forced to leave his job.  This man with a degree in accounting had to deliver pizzas for a year before he could get another job.

My prayers are with the parents of Charlie Gard.  If nothing else, that they may be allowed to take him home to die in their arms.  And that they have peace in knowing they did everything they possibly could do for their son.

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About techgirl1951 (293 Articles)
"All shall be well and all shall be well and all manner of things shall be well". Julian of Norwich.

4 Comments on The Tragic Dilemma of Baby Charlie Gard

  1. I am not sure they will get to a state of grace and peaceful acceptance for a while yet. They seem to be at the center of a medical, media, judicial, ethical and moral tsunami and are just looking around hoping someone will jump in and save them. They want someone to make the decision easy, make it the right one…my prayers go out to them too

    • techgirl1951 // July 8, 2017 at 9:45 am // Reply

      Oh, it will take a long time for them to heal and scars will always remain. I don’t think they are looking for an easy decision, there are never any easy decisions in situations like these – but you try to make the best decision possible given the circumstances. It may be the right one. It may be the wrong one. But all you can do is try your very best for your child. I do know that God can take the worst experience of your life and turn it into one of the best – but it takes time – years even for you to be able to look back and see it.

  2. That is a tragic tale and you offer much wise counsel, Thank you

    • techgirl1951 // July 8, 2017 at 9:41 am // Reply

      Thank you. I don’t know if it as much “wise counsel” as bitter experience. You deal with these situations because you have no other choice. I fear there will be no happy endings, but I do know that God can take the worst experience of your life and turn it into one of the best.

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