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Living with the palliative decision 
Started by KendricksDad
18 Nov 2013, 3:12 AM

It's been 11 months since my six month old son passed away while in palliative care. His death was inevitable - he could no longer breath or digest food. We sought second opinions and met with everyone we could to understand what we were dealing with. I still have complete confidence in the medical team we dealt with. I don't really have many doubts about our decision.

But I am regularly haunted by the image of my son looking up at me while I held him shortly after is breathing tube was pulled. It was this look of confusion - like he was asking me 'Why are you doing this, Daddy?'.  I don't really know what to think of it.

To make matters worse, he was initially mispronounced dead incorrectly. The nurse had left us time to be with him, and I had to call her after five minutes because I noticed he was breathing. I tell myself he was giving my wife a chance to hold him as well while he died, which she did. But it just doesn't sit right with me.

Everything else I'm kind of able to see as a natural occurence - picking out clothes for him to be buried in, walking him to the morgue, saying goodbye. Way too early, but part of dying. But those two moments when he died just seem to stick out in my mind. Something inside me tells me it shouldn't have happened this way.
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Reply by moderator | modératrice
18 Nov 2013, 1:29 PM

Hi KendricksDad,

Welcome to Virtual Hospice and thank you for sharing with us. I hear both both peace and torment in your message. Your story puts a firm grip on my heart as it would any person with feelings. Frankly, I'm at a loss for words fearful of saying the wrong thing, but at the same time I want to say something - let you know we're here. What we can offer in our little community here on the Virtual Hospice forums are big ears. We're listening.

It sounds like you were confident in the medical care your son and family received. Did you also get non-medical support, for example from bereavement specialists, social worker or spiritual care counsellors?

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Reply by KendricksDad
18 Nov 2013, 2:48 PM

Thank you for your comments.

The hospital is family centred and we received alot of non-medical support. Palliative care included time to create all sorts of keepsakes like molds of his feet and hand prints. The palliative care lead was incredible on that side as well. Even the nurses were incredible - we intend to visit them with our newest son who unfortunately will have to have a minor surgery at the same hospital soon.

We are fortunate in the knowledge that if my son could have been saved, he would have. I know he would have died much earlier if he had been born 10 years ago, and maybe 10 years from now cases like his will have a more positive outlook.

There have been some horrible things to go through for us, but I have come out seeing the good in so many people. The nurses and doctors. The staff at Ronald McDonald House where we had to stay. Our friends and family. Even the cleaning staff at the hospital were incredibly kind and helpful.

His last moments were at night when an inexperienced doctor was on shift. Maybe that might have made a difference. Or maybe in the dark times, there will always be horrible memories coming back - regardless of how 'smoothly' an expected death goes.
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Reply by lohoke
18 Nov 2013, 5:52 PM

Hi KendricksDad, 

Your posting was a powerful message to me. I have not been in your situation but have several friends that have lost a child. 

Please accept my deepest condolences at the loss of your son. 

I have started reaching out to these other friends to see if they might be able to join in this conversation at this time. 

Kind Regards
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Reply by Jonathan (Sasha Bella's dad)
18 Nov 2013, 11:10 PM

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.  


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Reply by KendricksDad
19 Nov 2013, 9:49 PM

Thanks again for the comments.

They did try sedation, but there were complications. He started having seizures, which we knew were a risk, but hoped wouldn't occur. That said, he did fall asleep fairly soon.

The team was pretty good at preparing us. We knew death wouldn't be black and white, but we weren't expecting him to start breathing again so long after the declaration of death. I know the doctor looked horrible when he had to come back to check his life signs again. I'm pretty sure it effected him too.

I don't want to put blame on anyone. There's always room for improvement in every situation, and I know the team we dealt with was world class. Sometimes a situation comes out the way nobody wants it too, and no ones to blame. There are still many mysteries in medicine.

I think I'll send all the hospitals we dealt with (there were 3) some comments when I'm ready. We were in hospital with him for six months, which is very rare for NICU's, so I know we've seen alot more than the average nicu parent. I'll be sure to include the things to keep doing - we still use them as our go-to hospitals.

I'll also never forget hearing our nurse quietly crying in the next room while he died. She was one of his core nurses, and was with him the whole time. I'm sure they're told not to cry, but the fact that she did cry meant so much to me. I knew she and the others saw him as not just a patient, but someone they also desperately wanted to first save, then give as much peace as possible.
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Reply by Kim G
20 Nov 2013, 7:34 AM

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.


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Reply by NatR
24 Nov 2013, 9:20 PM

To each of you sharing your stories of loss Kendrick's dad, Kim, 

thank you for reaching into your hearts and sharing the moments that will always be in your memories.

there is not much worse than losing a child, it is unnatural.

I watched my parents lose two children, it was very difficult - one a baby, one an adult.  The love of a parent for their child is consuming. 

My thoughts and sympathy to each of you.
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