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A VERY sensitive topic - Page 2

post #21 of 26
I don't know if this will help at all, but I wnated to share my story a little. I was pregnant with a very much wanted little girl 5 years ago. I was diagnosed with severe pre-eclampsia and HELLP syndrome at 24 weeks. The doctors decided that to save my life, they needed to deliver my baby immediately, like within 2 hours of diagnosis. I was told she only had a 60% chance of survival and there would be severe complications if she survived. I found out later that due to IUGR, she probablly would have been blind, deaf, had cerebral palsy, severe mental retardation etc....
As they were wheeling me into the operating room, a huge part of me was hoping she wouldn't make it. I didn't want her to live a life that challenged, full of doctors, operations, procedures etc. Of course my fleeting thought did not have anything to do with the outcome. She survived for an hour but was unable to breathe on her own. And for a long time I felt very guilty for having that thought. I have come to peace about it now, knowing that letting her go was much harder than keeping her here would have ever been. I guess what I am saying is that sometimes the greatest act of love a mother can give her child, is to let them go peacefully, with dignity. Sometimes, being a cheerleader means fighting to the death, for a sacred death. Only you know if that is the right thing to do for you and your family.
post #22 of 26
Hey there,

I stumbled onto this post from the main page. I don't know anything about your son's particular condition. But I did want to speak from the position of having made that decision. My daughter had a cord accident at her birth and the brain and other organ damage was very severe. We made the decision to take her off of the ventilator and she died about 24 hrs after that, 4 days after her birth.

We were fortunate to be transferred to a children's hospital with a lot of wisdom and experience in their NICU and a team of experts that was able to run a lot of tests and share with us the reality of the results of those tests in a way that we could understand.

So I guess the first thing that I wish for you is that whatever situations you find yourself in, you have the same. The final decision was ours but we were never really alone in it - we had time and attention from the whole team - doctors, nurses, technicians, chaplains.

My experience with that (and it is very personal) was that my husband and I came to understand that our role as Emily's parents at that time was not to extend her suffering in order to preserve our dreams. We were entirely willing to restructure everything in our life to give her a chance - easily said, of course, when your child is a newborn, but we did take the time to explore it and to talk to people who had real knowledge. We knew that we were not making the decision out of fear or inconvenience but out of concern for our child.

On a religious note we did wonder a little bit very briefly if we should "have faith." After discussing it together our consensus was that our beliefs (not insulting anyone else that thinks differently!) are that God does not cause suffering to infants to test the parents. We prayed on it in our own ways and I think that is where some of the peace came from - I felt that God had sent us the expertise that we had to help us to make the right choice and have faith that it was okay to disconnect the ventilator and accept what happened next.

Again this is VERY personal and I only bring it up because I think sometimes any discussion of faith is supposed to belief in the "big miracle" of a cure, or a happy life. And sometimes that is the case. In our case however we felt that the miracle was a little more muted and the acceptance of a lousy, lousy outcome was where the grace occured.

That said, and even with a fairly cut and dried situation as these situations go due to the extent of the damage, it is not a decision I think I will ever feel entirely good or unambivalent about. When I hear about stem cell research of course I wonder if we had managed to keep her alive for 10 years if things might be different. But I guess I have come to believe that when it is a life or death choice, it might be even scarier if I felt sure. I can't be sure that I did right on some objective scale in the universe. I can only know that I did what I believed wholeheartedly was right at that time. The questions I live with now are a natural outcome of that whole situation.

We experienced some family backlash about it and it was fairly awful, but because we had had time with people who truly knew all the facts of the case, and who had seen both outcomes for other families, my husband and I have not felt that maybe those family members are more right than we were. Just insensitive and ignorant on the one hand, and caring and believing what they believe on the other.

Again this is something that is so dependent on your particular situation and beliefs. I am so sorry that you have to be considering these things for your son. I hope that there's something useful for you in my and my daughter's story, whatever you decide or whatever comes your way.
post #23 of 26

You are NOT a bad mother.
post #24 of 26
Big huge hugs. I loved the photos of your sons, both are beautiful.

Before I had my DD I would have thought that fighting to the end was the "only" way, but now after seeing her (and reading posts here) go through test after test, being poked with needles, MRI's, CT scans, all the therapy, Dr. appointments etc...and it is not close to what a lot of other children go through...I just can't do anymore to her, and I want to believe that I would be as strong as you are if she was in the same situation...to let go and just stop. Although our situations are different, I can understand why you feel the way you do.

You are more of a good Mother than you know. You are willing to let your child just "be" which is very difficult.
post #25 of 26
A few years ago, a friend of mine found out during her pregnancy that her daughter had trisomy-18. She and her husband decided not to use heroic measures to keep their daughter alive. Even from the outside, it was obvious that all their decisions were thoughtful and loving.

During my visits I saw that her daughter only knew love. My friend, too, had to balance realistic expectations with hope. Trying to decide if a g-tube was right, once her daughter got bigger and stronger (she could never eat by mouth) vs. knowing who to call and what to do if her daughter died at home. The struggle, dealing with these, was enormous, but the grace she showed was enormous too.

The depth of love parents feel in a situation like this is obvious even to people like me who have never had to deal with something like this personally.
post #26 of 26
Hugs! I have a friend (not on this board) who has a 5-6 year old dd with mito. they have a caringbridge site, too. The mom is a wonderful person and very educated about mito. She is a very realistic person and has done 120% for her dd, but is prepared for the future. Pm me if you want her contact info.
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