Tonight's picture was taken in July of 2009. It was over the July fourth weekend. Our friends invited us to a local resort, so Mattie could have a diversion with friends. In theory this sounded good, but Mattie was miserable. I think spending time with kids his own age who were unaffected by cancer, depressed him even further. Others may not have seen how he felt, but behind closed doors, Mattie would either lash out at us or totally retreat and shut down. It was heart breaking to experience. In this photo you can see that Mattie did not want his photo taken. So he put his leg up to try to cover his face. His friend did the same... sort of in solidarity. But this weekend remains forever in my mind. Perhaps without the behind the scenes commentary from me, you would have NO IDEA about the true context in which this photo was taken.
Quote of the day: Mummy and Daddy love you so much Charlie, we always have and we always will and we are so sorry that we couldn't save you. We had the chance but we weren't allowed to give you that chance. Sweet dreams baby. Sleep tight our beautiful little boy. ~ Charlie Gard's parents
Can you imagine as a parent having to express the words above? For those of you not following this case, Charlie Gard was only a baby, 11 months old. He was born with mitochondrial DNA depletion syndrome, a rare inherited condition that causes muscle weakness and loss of motor skills. Only 16 people in the entire world have been diagnosed with this disease.
It is hard enough coping with such a diagnosis, but how would you feel knowing that there is potentially an experimental treatment in another country that may give your child a chance at life and yet the local hospital refuses to release your child? Well I imagine this is how Charlie Gard's parents have been feeling. After almost a year long battle with the hospital and courts in England, Charlie Gard died today. Now these parents are not only contending with the death of their child but also living with the what ifs!!!!
What if Charlie was able to come to the United States and receive experimental treatment? Would Charlie be alive today? NONE of us know the answers. Yet apparently the hospital and court systems deemed themselves all knowing and all powerful. To them this was just a patient case, while to these parents, it was their world. Any parent with a child who is ill and in the hospital today, should be thankful they are living in the USA. If in doubt, just read about Charlie Gard's battle and death.
Dr. Michio Hirano of New York's Columbia University Medical Center, even visited Charlie in London to assess whether he was a good candidate for the experimental treatment. If Charlie was released earlier to Hirano's care, there is a possibility that Charlie would be alive today. But instead of allowing the parents to have the authority and control over the life of this child, Charlie's life was caught up in RED TAPE. Tape being the hospital and the court system. Unlike in the US, where parents have certain rights, in England the right to die is decided by the court. Absolutely absurd, horrific, and unethical. The court did not give birth to this child and rear it, therefore, they should NOT have any say in how the child is treated medically and worse how the child dies. All unacceptable to me.
My thoughts go out to Charlie Gard's parents. Not only were they fighting for their child's life, but they were fighting a system that values laws and rules over life. Living in the USA, it is hard to comprehend the complexities of this nightmare that the Gards faced. After all if this were in the USA, we would sign our child out of the hospital and move along to the next provider. Regardless of how we would pay for this, as most parents do go into debt over a healthcare crisis. But the point of the matter is we have choices and are empowered to make decisions.
The Gards even had to take Charlie's case to court with regard to how Charlie died. As they wanted their son home with them, without media coverage and being surrounded by hospital personnel. Again the court refused this, and placed Charlie into a hospice facility. I am not sure how the Gards will ever heal from this nightmare, because as a parent we are supposed to do whatever is humanly possible to care for our children. In their case, they weren't allowed that ability and I have no doubt they will forever be haunted by the WHAT IFS!
Baby Charlie Gard dies after life support withdrawn:
http://www.cnn.com/2017/07/28/health/charlie-gard-death/index.html
1 comment:
I knew instantly when I looked at the photo that Mattie was quietly protesting,picture time. I only know this because of a career where children, seriously ill taught me the nuances of quiet protest. They quickly learned how to do this because complaining was reserved for their parents, mostly!
Charlie. Gard's parents lost the basic rights to their child's welfare when he was born with this horrible disease. They lost basic rights to decide his. Care or long term treatment and ultimately, his place to die. The entire thing was botched because of rules & bureaucracy instead of basic human rights and caring. The heartbreak is unimaginable!
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