Sudden Infant Death Syndrome (SIDS) Support Group

Well I'm not sure where to start really, but as a summary my beautiful son finally died after we turned off his life support machine.

I am now in complete agony wondering if I did the right thing. I have been collecting cuttings from the paper about miracle babies who have recovered against all the odds after their parents had been advised to turn off their life support machines.

If I'm honest with myself, their stories are all different from mine, in that the doctors had given their parents a small chance of recovery, even if it was as low as 1%. The doctors told us our son would never recover.

What happened to my son... well, I found him after his heart had stopped. It seemed to me like he was already dead then. I tried to ressucitate him, the paramedics tried, the doctors tried. Eventually, after over 30 minutes of his heart having stopped and no oxygen reaching his brain (blood tests confirmed none of the oxygen adminstered to him during the ressucitation process was reaching him); The doctors managed to get a pulse and they put him on a life support machine and took him up into Intensive Care.
He appeared to be making some irregular attempts at breathing.

It was there that several highly qualified and experienced Consultant Doctors told us that Jay (our son) had suffered extreme brain damage which could never be reveresed.
They said that although in many ways babies in intensive care were unpredictable and they could not say for certain what Jay's future would hold; they said what they could say for certain was that if Jay did survive; he would spend his life in a vegetative state. They said he would never walk, talk, see, hear, feel pain or emotions and he would rely on intensive care for the rest of his life. They said that was the certain outcome if he DID survive, but that it was highly unlikely that he would survive.
We were told that the attempts he made at breathing were highly irregular and abnormal; and instead of being reassured by this they were actually even more concerned, because the breaths he took were like the last breaths someone takes before they dies.
He made these abnormal attempts at breathing for a short while, but then stopped making any attempts to breathe on his own at all.
The doctor said another sign of the immense brain damage he had suffered was the fact that despite he was on a ventilator, he was just lying there, completely unresponsive. He said that being on a ventilator is highly uncomfortable and normally they have to sedate patients so they can tolerate it, but Jay was just lying there...
And when he was on the life support machine.. well looking at him, it felt like he had already gone; who he was, his soul, had already left. That was my overwhelming feeling as a mother.
We were told that the longer he stayed on the machine, the higher the likelihood of survival, but if he did survive, it would not be a good outcome for him as he would have no quality of life at all.
The doctor said "you may be thinking of some very disabled children who still manage to smile and communicate, and can be cared for at home by their parents, and have some quality of life. I would not say this unless i was certain, but I can tell you for certain that Jay will never be like that; the brain damage is too severe".
So we agreed to turn off the machine, and Jay died peacefully in our arms.

Even knowing all of the above I can't help feeling that I may have made a terrible, terrible mistake and that as Jay's mother I should have fought for him to live no matter what. I can't help wondering if had he stayed on the machine longer he might have made some miracle recovery.
I am in agony, please help me.
Posted on 06/22/09, 05:06 pm