Difficult question to ask....

[Tammy]

Dear Parents,
I have a question, but I have to be honest and say I'm a little reserved in asking, because I know it will be an emotional one, and personal.

I never had the opportunity to spend time with Chase after his birth while he was living. My question is, how did you deal with the emotions and decisions of having to take your baby off life support, or how did you cope with knowing your baby wasn't going to survive?

Tough question... I know. I would like to get a better understanding of this situation, so I may help another family. Any thoughts would be appreciated, when you are ready to share them.

[Jamie Little]

Tammy,

I didn't have to make the decision to take Keiran off of life support, but we did make the decision to not have medical interventions if she was born alive. She died sometime during labor and we made the choice to not monitor. We knew that there was a high risk of her dying during labor and we didn't want to know the exact moment that she died. For us, deciding not to intervene was really tough. It came down to what was best for her, not what was best for us. To have tried to keep her alive seemed selfish to us because she wasn't going to benefit from it in any way. It would have been for us and us alone.

We knew at 14 weeks pregnant that Keiran would most likely die. I have no idea how we survived. I was on auto-pilot. Looking back I can't believe that we made it. I took solace in planning. I had everything planned out and I knew what I was going to do at every turn.

I'm not sure if I answered your question, I rambled a bit there.

[Erica Stone]

Tammy, this is the place for asking those difficult questions - if not here then where?

We had such a short window in dealing with our situation. The bad news became nightmare news within a few days (we didn't even have time to process the "mildly" bad news) and we had some awful decisions to make. I didn't know how to cope with anything other than what was right in front of me. I couldn't even think five minutes into the future. I echo Jamie by saying that our decisions were based on what was best for Matthew.

As for the emotional aspect, I'm still dealing with it as I know we all are. I think we each do the best we can in our individual situatons. All I can say is that for me, I have to deal with each emotion and each emotional situation as they arise. I have relived my nightmare over and over in my head, wishing for a different outcome. I think the best I can do now is just to love Matthew and understand that ALL of my emotions are normal.

[A&JPearce]

We had to make the decision to take Vince off all medications (except pain meds). This was the hardest decision we have ever had to make. I feel that "coping" with that decision was not really what happend. We had the best seven days we could with him alive. We knew in our hearts that we made the right decision.

[Tammy]

I wish to thank Jamie, Erica and Allison for sharing their thoughts on this. The strength you ladies have is truly incredible, as are all the parents who have been in this circumstance.
You're right Erica, if we can't ask those difficult questions here... where else is there to go?

[Jen Eagan]

We had Hannah on life support for as long as we believed she had the slightest chance. We didn't care how we got her back, if she was "damaged" or "broken", we would take her in any way we could have her. Eventually though, the damage was too much and we knew in our hearts she was gone. She didn't even look the same that day- I believe her soul had already left her body before we got there that morning. My husband and I discussed between ourselves in private that we didn't want to put her through any more, she had gone through so much already- and after confirming with the doctors again and again that the only thing keeping her little body technically alive were the machines, we agreed to let them stop. She never even took one breath or had a single heartbeat after they turned off the machine. She was already gone.

Because we believed she was already gone, we never felt that "what if we'd waited" guilt that a lot of parents feel. I still have guilt about other circumstances but I try my best not to think about those because I will make myself crazy.

As for coping with knowing my baby wasn't going to survive... I considered it a blessing. I'm glad I was able to know, because it allowed me to appreciate every moment I had with her. I remember one night she was up all night and my husband was really frustrated (lack of sleep and screaming child will do it to anyone) and I not-so-calmly told him (my husband) to shut up because we should be glad she was still there to scream at us and who knows how many nights we'll have her.
If she had died suddenly with no warning (which she almost did, 2 months earlier) then I believe I would have had more guilt over not knowing something was wrong or not doing what I could to prevent it. My circumstances were given to me in a way I could best handle it. Other parents would be better off not knowing. I just believe we are never given more than we are able to handle- even though obviously it's more than we would ever WANT to handle.

[CMatros]

With our little Anna, I had no idea anything was wrong with her at first, we just thought that she was early. It wasn't until 2 hours later that a doctor came in and all I now remember is watching her mouth move but nothing coming out. Finally I interrupted her and said " are you telling me that if I don't go and see my baby, she will die???" "Yes" was the doctors response. When I was wheeled into the nursery, there were nurses, doctors, everyone it seemed like, just standing around while the doctor was breathing for Anna. My first thought was "what is everyone standing around for?" Anna never was stable enough to breathe on her own. We were told that if she were to all of a sudden become stable, her quality of life would not have been good. Now I work with 18-21 year olds who have disabilities...some are in wheelchairs and use computers to talk....others only have ADHD...but it is the other participants that I see on a daily basis who are confined to wheelchairs and cannot do anything on their own. It is almost a blessing in disguise that this happened to us. Everyone deserves the best out of life. Would we have loved or looked at her differently if she had made it....absolutely not....we would have treasured every moment that we had with her. I remember watching the doctor take the tube out of Anna's mouth...she gently placed Anna in my arms...there was still a heart beat....a nurse baptized her....she took one last breath....everyone was silent....