KendricksDad, from one bereaved dad to another, I trust your intuition and wonder what specific guidance you received or could have received that might have lessened those two painful memories?

Was the option discussed to sedate Kendrick so that he was sleepy? I realized when reading your story that I never put too much in the fact that when my Sasha died at age 2 in our bed that her eyes were closed as she was in a deep natural sleep. Or might it be a case where sedation is more for the parent’s benefit than the child?

Did anyone mention that your child may stop breathing and then restart? This is what my child did and we were prepared by our SickKids palliative doctor. It also allowed me to hold Sasha one last time. My wife held her after she died. Your thought that “he was giving my wife a chance to hold him as well while he died, which she did” is a healing story to cherish; Kendricks final sense memory was not the pull of the tube but of his mother’s loving warmth.    

Staff experience of death IS variable, particularly with end of life care, and some health care professionals are still uncomfortable offering specific guidance, maybe out of some sense of respecting the sanctity of our bond. But the result can be to let parents figure something out that they have no experience in and about which little has been written. If we feel there are things we ought to know it helps these doctors help other families.     

Please consider reaching out to the palliative team for a meeting when you go in again. You could even request the attending physician join. It helped me immensely to ask questions directly of staff and learn from each other.

Many hospitals have opportunities for parents to tell their story as part of staff education. There is also a detailed questionnaire written up at http://www.tourangeauresearch.com/student-research/kimberley-widger-rn-mn-chpcnc-phdc/ which you can ask the team about and if they do not have it then the primary investigator, Kim Widger, can help.    

Thanks for sharing your memories of Kendrick’s last moments and your concerns and I look forward to your thoughts. You gave Kendrick the greatest gift, your presence and love through the good and the painful times from first to last breaths, and your questions honor his life and death.  

Regards,
Jonathan  

Dear Kendrick’s Dad

I am so sorry for your loss.  I too have a lost a child.  Kristopher was born prematurely and died 2 days after his birth.  I was able to hold him when he passed and I was filled with mixed emotions.  I was able to cuddle and talk quietly to him telling him how much we loved him.  I remember him looking into my eyes and all I thought about was ensuring he felt loved, protected and cherished.  When he looked at me it seemed as if he was studying me and that actually made me feel better. I just knew in my heart that he knew I was his Mom.  I felt he understood how much I loved him and with his beautiful tiny face could feel his love for me.  He passed within about 5 minutes and that was a blessing because I was praying he would pass quickly and wouldn’t have to struggle for breath. 

We received the autopsy report a while later and I had a hard time emotionally when I read the cause of death as asphyxiated.  I knew that was what happened but then I started running it over and over again in my mind that I had actually caused his death.  I had to force myself to concentrate on my memories of comforting, talking to him and holding him tight.  Had I not focused on the good memories and just thought about the word asphyxiation it would have driven me crazy. I really had to hold onto the moment and the thought that he wasn’t alone and was surrounded by love when he passed, not the actual cause of his death.

Reading your story I feel the same way as  Johnathan that when you mentioned “he was giving my wife a chance to hold him as well while he died, which she did” I agree it is a healing story to cherish; Kendrick’s final sense memory was not the pull of the tube but of his mother’s loving warmth.    

I hope my story helps in some small way.  I know it helped me to hear about others experiences and made me feel a little more 'normal' with the feelings I was experiencing. All the best to you and your wife.

KimG