I am so hurt and upset with the comments that I am reading on various news sites about the situation of little Baby Charlie Gard...
Let me start off with, I am one of the few people around who an truly comment on this. Many of the others I have read commenting are just basing their thoughts on what they think should be done. I've literally, BTDT (Been There Done That)!
The last two weeks of Yossi's a'h life were very hard, not only on him, but on all of us. For some asinine reason which I have never been able to get an explanation for, the doctors and nurses kept pushing us to kill him. Oh, excuse me, turn off the medication that was keeping him alive. Why? I have no idea why! They didn't need the room, as there were several empty rooms on the BMT unit. As religious Jews, we made it very clear we weren't killing him. But that didn't stop them from repeatedly asking us to. One nurse, who we really liked, recommend we turn it off while she was on with him, so it would happen when someone we knew and trusted was with him. That was a full two weeks before it actually happened.
The week before Yossi died, I had a world wide prayer vigil at the same time. You have to realize that was in 2001, when the internet was still in its infancy. There were no "blogs" or social media. It spread from word of mouth. I don't remember how many people actually did it, but I do know it was world wide. It was an amazing thing. Even the stuffy doctor who I couldn't stand came into the room to pray for him. (My husband said, "You know things are bad when the doctor is praying.") You have to also understand that as a parent, I believed with all my heart and soul that he was going to make a turn around. I went so far as to tell the stuffy doctor, You watch! Twenty years from now you will be discussing the great miracle that happened here! Before the prayer vigil, I had explained to the doctor that every second Yossi was alive, people were doing good deeds. They were praying for him. He was accruing so many mitzvos. Why deny him that? Who are we to decide when it's time to stop? I was so desperate for him to live that I was even willing to take him as a vegetable. I begged Hashem, just let him live! The refrain that my social worker from Chai Lifeline said all the time, where there is life, there is hope. Once you are dead, that's it. No more chances.
The night Yossi died, we were advised by our rabbi to speak with two doctor friends to get their opinions. One was a top heart doctor, who also happened to love him. After hearing the report of the nurse, he cried to me, saying, "I've never seen anyone come back from a multi-system shutdown". The second doctor, a pediatric heart doctor told me that the amount of medication they were giving him was barely keeping him alive. Not only that, the amount would actually hurt a healthy adult, it was such a high dosage. So with these two thoughts, we spoke with our rabbi. The rabbi asked me, "Why are you holding out?"
I answered him, "Because what if we shut off the medication today, and Hashem wanted to make a miracle on Tuesday? It will be too late then."
Do you understand? A parent will grasp at anything, anything in the world to save their child. Why should ANYONE say that baby Charlie has a bad quality of life and therefore doesn't need life support? Why doesn't the desperate wishes of the parents not mean anything? Why should someone who is going to go home to their own children and in a few months or years FORGET about him, but his parents will never, ever forget him; or get over his death? Why should his parents be haunted by the thoughts of, IF ONLY WE HAD DONE IT ... Maybe he would have lived???
In the end, Yossi died. Yossi had Graft Vs. Host Disease, an aspergillus infection, and four major organs had shut down. His heart was barely getting blood to his extremities. AND yet ... if I could have had just one more day ... or one more hour ... I would have done it that way all over again. Another little boy on the BMT unit died the week after Yossi with the same things, GVHD, infection, multi-system shutdown ... and the parents immediately pulled the plug and went home to mourn their child. I don't question why they did it; I just know for me, I couldn't live with myself if I did that. It is one of the few things that I have complete peace about ... I know for a fact that I did everything humanly possible to save him .. Ultimately it was Hashem who decided that he wasn't meant to live. Not some doctor or nurse who recommend we do it.
If you are lucky enough to have never lost a child, then you can not understand the depth of the despair. The pain. I've tried before to explain, but it is about as helpful as trying to explain colors to a person who has never seen ... or sound to a person who has never heard. It can't be done. You can't go there, so don't even try. I *KNOW* what these parents are feeling. I know the desperation they have for their child to live. For some group of doctors and a judge to decide his fate is beyond deplorable. They are taking a toxic situation and making it even worse for these poor parents.
At the end of the day, the world will go on, and we will soon forget about little baby Charlie. But his parents never will. And they will remember how the doctors and judge and clueless people thought their precious son would be better off dead because he wasn't have a great quality of life. And I promise you, THAT hurt will go away with time.
(On a side note ... the medication that I got special FDA approval for Yossi to use the week he died ... Another teenage boy had a similar issue after Yossi passed away, and I helped them get the medication that saved their child's life. And after that I heard about child in Atlanta who also benefited from the same medication. It has become standard treatment in the BMT unit. So you never know when these experimental medications will help someone else.)
