You may have seen the news story about baby Charlie Gard, an infant in the UK that was born with a rare genetic condition and specialists have decided that life support measures should be discontinued. The family has raised enough money to bring him to the US for experimental treatment, but the courts have backed the hospital and decided that the parents do not have the right to determine their own child’s direction of care. This case has really been on my mind, I pray for the family and wonder if that could happen here.
While our situation is much different, having a child with serious medical challenges gives me some perspective. As a parent, you fight for your child. You strive to keep them healthy and provide for their well-being regardless of their challenges, always wanting the best for them. That’s one of the hard things about parenting a special needs child. I am well aware of my child’s challenges, but my job is to manage those challenges while pursuing the possibilities. Sometimes my husband and I are very alone in this, but we don’t seek anyone else’s permission to fight for our child. It’s our job.
Specialists at the hospital believe that there is no hope for sweet baby Charlie Gard, his genetic condition cannot be changed thus his future has been determined. From all evidence, some may agree with the courts and think that the family just needs to come to terms with the inevitable. It’s been boiled down to a business decision, but this is a slippery slope. Who decides when we should give up on a life? I contend that only the parents should make that decision.
Although different from what the parents of Charlie Gard are going through, I’ve had my share of experience fighting with doctors for the value of a loved one, only to be proven right. Several years ago my dad was in a coma, the neurologist said he was brain dead and life support should be terminated. When our family protested, the doctor continued, stating that my dad “couldn’t feel a thing” as he cut my dad’s foot to prove it. I immediately had that specialist removed from my dad’s room and his care team, but the doctors all agreed with this neurologist and thought we just weren’t coming to terms with the inevitable. That is until my dad came out of the coma, which turned out to be an over medication of propofol, and he was able to tell them otherwise. If the doctors, hospital or insurance company could have superseded our family’s decision, I would have never heard my dad’s voice again, never seen his smile again, never gotten to tell him I loved him again. The doctor would have gone on, his life unchanged.
Last summer my daughter with special needs got very sick on a road trip in the middle of nowhere. After being airlifted to the hospital I was told that she “wasn’t going to get any better,” and that “I should consider her quality of life.” After everything I had seen on this journey, I became filled with fear. I went out to an empty patio and cried, and I prayed. Then I remembered who I am, got it together and went and fought for my child. She is now healthy and happy, with a great quality of life.
Allowing anyone but the parents to decide the fate of their child puts someone in a position of determining a person’s value, when they have nothing at stake. A line has been crossed. Next time maybe there are more shades of gray, but when you supersede a family like this once, it’s easier next time. Those doctors, judges, hospital administrators, insurers all go home to life as usual. Why is this even a fight? The family has raised the money, even the Pope has offered to bring the child to the Vatican for care. Is this about the hospital and doctors trying to save face? Seriously, what is the hospital hiding? Someone needs to put their pride aside and re-read the hippocratic oath.
We all are born with the right to pursue life. When the time comes to make end of life decisions it is the parents or family that should have the right to determine the best path for their loved one, and they should be able to pursue every available opportunity as they see fit.
Charlie Gard, God bless you and your parents.