Topics of Discussion
When you expect your baby to die.

wisdom from the Preemie-l e-mail group           http://www.preemie-l.org

Ed shares how he and Laurel handled the most difficult time a parent could ever face.

I’ve seen at least two fairly current messages about the real possibility, and at very least the real fear, of a hospitalized child passing away. There are some personal reminders in these, and this is not a post for those who have difficulty with frank talk about children dying. If that bothers you, I recommend you delete the post NOW!

Almost three years ago in July we watched helplessly as our former 24-weeker, "Buddy", went from condition to condition that ultimately led to his death after 140 days in the hospital. Let me share how we handled it.

First, we asked the doctors a lot of questions. Our son had abdominal bleeding that led to his kidneys failing that led to his death. We just needed to know that we had thought of possible remedies and had good reasons why they wouldn’t work. I needed to know that there was a good reason for letting go. Perhaps it was just a way of expressing how helpless I felt.

Second, we asked the doctor what it was going to be like when he died. We asked about physical reactions—what would he look like when he went, would he gasp for air, would he convulse, etc. The doctors told us that they would remove all the connections, but not the "stuff" that was in him (i.e., the intubation tube in his mouth, the IVs), but everything on him (temp monitor, etc.) would go. We made sure that the alarms were turned off. We were assured that Buddy would get one big shot of morphine before they removed everything. He indicated that it was likely that Buddy would just fall asleep and not wake up. He also said that Buddy might turn a bluish green color and that was normal. He also told us that Buddy might "gasp" for breath or kind of convulse. These were normal instinctual level reactions but were not indications that he was trying to breathe and just couldn’t. He was too far gone for any of that to work. Buddy didn’t gasp or anything, but I think not knowing and having it occur would have bothered me forever.

Third, we discussed with the doctor how "we wanted things to go". He explained we could let him go in his bed, we could go to the parent conference room, we could have lots of people around, we could have very few people around. We could even leave the unit and let them take care of it and inform us after he died. We chose to hold Buddy in the conference room. It had a couch, privacy and some soft lights. We also chose it so that other parents wouldn’t be disturbed by seeing a baby die.

Fourth, we discussed between ourselves who would hold Buddy last. We decided that I would do that. Laurel held Buddy while they removed connections and then handed him to me. We walked to the room and I remember saying repeatedly how much we loved him, and would miss him. We also went through the days before doing all the things we wanted to say we’d done. Laurel bathed him, read Peter Rabbit, the Velveteen Rabbit, and Charlotte’s Web. I read some important religious material to him. I gave him a blessing (something I can do in my faith). We took pictures, we sang to him. We lived two hours away from the hospital and this was the first time we spent days with him. It helped us say good-bye.

Fifth, had we known we would have brought something to clothe him in for transport to the morgue. The unit had some clothes and we used a really cute boy’s jumper.

Finally, I believe if you have to let your child go that it is the absolute hardest thing you will EVER do in your life. It’s ok to cry. It’s ok to hurt. It’s ok to feel empty and lost and betrayed by the universe. It’s ok to be angry. It’s ok to be tired, and it’s ok to want to hide. I will tell you it gets easier over time. One day you will be happy again, one day you will find joy in things, and one day you will laugh again and not betray the memory of your child. It’s been almost 1000 days since Buddy left and I’ve thought of him at least once every day, sometimes with joy and sometimes with pain.