For a purely technical standpoint, I wonder how the family and LTC facility imagine this playing out if she is transferred. Can the family afford private pay? I can't imagine any insurance company agreeing to pay for continuing care of a brain dead patient and any billing to government programs would result with the DOJ knocking on the nursing home's doors for health care fraud.
I cannot bring myself to read the article but get the gist of it from this thread. This seems a good place to add my story as I have been in this mother's shoes. It may get long and rambly, sorry.
TL;DR: Teenage daughter was on life support. We made the hard decision to have her removed and do organ donation. Hardest decision ever and still feel guilty over it 14 months later. Hospital was wonderful to us, but had very set parameters as to what they were allowed to say to the media.
On the evening of Monday, October 22, 2012 my 14 year old DD was found in her hospital room of a mental health care facility, without any vital signs. There is discrepancy as to how long she was in that state. Anywhere from 5-15 minutes is our guess. Firefighters, the first to respond, spent 14 minutes working on her and were able to get her heart to start again. She was transported to Children's Hospital PICCU where she was sedated, cooled and placed on life support.
It wasn't until Wednesday that doctors felt her heart was stable enough to take her downstairs to have an MRI to find out exactly how much brain activity she actually had. For those two days, until we had some answers, my XH and I refused to sign a DNR. She was trying to fight the machine once in a while to try to take a breath on her own, but her breathing was considered ineffectual. Her feet would twitch and one of her hands would open and close. Every now and again she would seem to shiver. We took these as good signs. We talked to her and touched her constantly so she would know we were there.
The MRI showed that there was actually very little brain function left, only 3 whispers of activity were showing. Not enough for her to function without machines. While all of her other organs were starting to repair by being on the machines, the brain is not an organ that repairs itself. For the first couple of hours we did not want to believe this, even a couple of the nurses were in denial. What about her movement? This was explained as automatic reflexes as her spinal column was starting to shut down.
My XH and I made the decision to take her off life support. We scheduled it for the Thursday evening giving out of town family members a chance to come in and say their goodbyes and to arrange for organ donation, as was her wish. I spent all of Wednesday night alone at her bedside holding her hand, watching her, watching the machines, talking to her, questioning if we were making the right decision. Every time she tried to take a breath on her own I doubted it.
On the Thursday the doctors told us that her organs were repairing very well and asked us to consider waiting an extra 24 hours for more healing time and better chances of transplantation. We agreed and spent another agonizing night watching our daughter. I cannot explain the emotions of being able to touch your child, feel her pulse, yet know that she is not really there any more. That is not what she would have wanted to live like, but making the decision to end it for her is not something I wanted to do.
On the Friday morning, she stopped trying to breathe on her own. She was taken down for another MRI which now showed no activity. We scheduled to have her taken off support at 11:30pm that night. The transplant team asked for another 24 hours for her heart to repair some more, but XH and I agreed that unless they had a specific patient that they knew for absolute certain could use her heart we could not allow this to go on any longer.
Friday went by way too quickly. I watched the clock the entire day counting down until 11:30. In the afternoon I got to spend an hour with her by myself. I begged her to let me know that she was ok with this and that she was at peace. She took a breath, the first in many hours. Later in the evening when XH and I were with her together, he gave her a hug as he cried over her. She took another breath. I still to this day cannot explain how this happened.
At 11:30 on Friday night she was removed from all machines. She lasted 6 minutes on her own while XH, DS and I stood next to her. I quietly sang "You are my Sunshine" to her because that is what I sang when the kids were small at bedtime. For the next 5 minutes we were not allowed to touch her as they legally needed 5 minutes of no activity on the machines to be able to declare her dead. Then in a well choreographed sprint she was taken down to the OR to get ready for the organ donations.
We could not have asked for better treatment from the hospital and its staff during those 4 days. We were given every leeway and resource they had to offer. They were compassionate, yet direct, in every meeting we had with the team of doctors. The nurses were incredible and kind and were crying along with us in the end. When it came to a media statement a couple of days later, though, the hospital representative just gave the basic technical facts as they were told to do by their legal team. It sounded cold and callous, but as a family we understood that there was only so much they were going to say so that nothing could come back to bite them later on. The hospital group had no idea what kind of legal actions we would try and take against them and so as little was said as possible. We know that this was just legalese, we saw first hand how much the actual doctors and nurses on the case really did care.
Although we lost our daughter, 2 young teenagers received her kidneys and a young mother of 4 received her liver. Her corneas are being stored. All three recipients are doing well with no rejection and we even received a lovely letter from the mother with her liver. That is part of where we get our comfort from.
It has been 14 months now and the grief is still very raw. While I know we made the right decision, I still have emotional moments where I feel guilt for taking her off support, like I made the decision to kill my own daughter.
If you made it to the end of all of this, thank you for letting me type this all out. Feel free to ask any questions. I am very open about my daughter's story.
Post by cinnamoncox on Dec 28, 2013 17:37:04 GMT -5
zozo I've said this many times already, but I am so deeply sorry for your loss. It's unimaginable to me. You made the best decision for your baby girl and I'm so sorry you feel any shred of guilt over it No one should ever have to go through what you and your xh went through.
I hope you are able to find peace someday. Or some semblance of peace
Thank you everyone for your thoughts. While I do not agree with the parents in this article, I do fully understand how hard it is to let go. I also believe that the hospital has a responsibility to the patient to be as kind as possible at this point, and that would be to not intervene medically any further. This child needs to be allowed to move on. I am not religious in any way, but I do now believe that we take on a different form after death. This child needs to be able to have that peace. Being a parent means putting the best interests of your child ahead of what you may be comfortable with, no matter how hard that is to do.
Holy shit, this was the result of a tonsillectomy???!
From what I've read, it sounds like she re-bled. Bleeding post tonsillectomy is no joke.
DS (2 at the time) had 3 re-bleeds post-tonsillectomy. It involved 2 calls to 911, 2 additional surgeries and a 3 day hospital stay. This was after he was kept overnight the day of the surgery to ensure everything went ok. It was terrifying. My heart goes out to this family.
zozo, I'm so very sorry for your impossibly difficult loss, but so impressed and thankful you were able to have your daughter give the priceless gift of organ donation.
You don't have to specify the cause (really), but I'm curious to know if you ever found out what happened to your daughter. I presume they couldn't do an autopsy since she was an organ donor.
Sorry, I had to grab something to eat.
We were aware of the cause right from the beginning. A police officer met us at the hospital and was the first one we spoke to (just a young guy, I felt horrible for him). DD's death was a suicide, specifically a short suspension hanging.
There was an autopsy done. The coroner had to give permission for the donation process to take place, but he had no issue with it. The report does list the organs that were missing and simply states that they were removed for donation.
XH and I cannot take credit for the organ donation. It was something we had discussed as a family but it was something that Sydney fully supported. While she was not old enough to participate herself, she was very involved with the donor drive committee at her high school. There has been a big push in Ontario for new drivers to sign their organ donor cards as well as getting the seniors who are old enough to participate in blood donation. This was fully her decision.
I feel like I've hijacked the thread and that was not my intention.
zozo - my heart pulled at what you had to go through with your daughter. I cannot even begin to imagine the pain and heartache you went through and still feel to this day. Your daughter sounds like she was a pretty amazing girl, to have been that young and that involved and empathetic toward others. I am so very sorry for your loss.
Thank you, mrsbpo! She was amazing. She was a physically beautiful girl, but ever since she was very young my biggest brag about her has been that she was just such a sincere and kind person. I try to be more like her every day. It made the stuff she was dealing with the last couple of years so much harder, but that's a story for another day.
Please don't feel that way. I hope that I would have a tenth of your strength and resolve bc I can only imagine my own heart just quitting on me if I went through that. Peace to you and yours zozo