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Parents of lost babies and potential of all kinds: come here to share the technicolour, the vividness, the despair, the heart-broken-open, the compassion we learn for others, having been through this mess — and see it reflected back at you, acknowledged and understood.

Thanks to photographer Xin Li and to artist Stephanie Sicore for their respective illustrations and photos.

for one and all > It's only been 3 weeks

It's been three weeks since my sons passing. Three weeks and what feels three hundred years.
Sage was two months and 26 days old when my husband and I had to end medical treatment and allow his life to end.

Has anyone else been the parent of a critically ill child who, because of their great suffering and terminal diagnosis made the decision to allow their child pass?
I cannot stop reliving that day and it's haunting me.
July 17, 2016 | Unregistered CommenterHannah
Hannah,

I'm so sorry.

We had a fatally ill child, but instead of living months, it was hours. We did not have to make decisions as comfort care was the only thing to do and death was imminent. I was grateful for that.

I have friends who have had to make decisions regarding intervention/comfort care, and they are haunted as well. The most helpful thing I heard in all my regretfulness and replaying scenarios was that in our situations, there are no do-overs. Parents have to make decisions all the time- easy and hard- and if they regret it; there's another day and another chance. We don't get that. We get one chance and under extreme pressure and pain and shock we make the best decisions we can. All out of love and all out of ache.

Try to be kind to yourself. You have been through hell, and it's only been a few weeks.

I'm sorry you can't have your baby with you now.
July 17, 2016 | Unregistered CommenterElaina
Hi Hannah,

I can't tell you how sorry I am to hear what you are going through.

We had to make a similar decision, although a bit earlier in our child's life. We found from an ultrasound very late in pregnancy that our daughter had a terrible heart condition. We were offered a very aggressive treatment option - cutting her chest open, taking her heart out, having a machine do the job of both her heart and lungs, and hoping that over time drugs might get her heart back in shape for functioning - but we were told she would most likely die anyway.

We were also offered to euthanize her, while she was still in utero (she was full term at that point), with the explanation that we can't take her life after birth if she happens to survive terribly impaired. We were told we can't opt to do nothing and just let her die in peace.

But we opted to do nothing, and were eventually transferred over to a palliative care team who were prepared to give her morphine and tube-feed her and be gentle to us for as long as necessary. We later learned that the heart-lung bypass machine turned out not to be an option, which would have meant, had I believed the doctor, that we *had* to actively end her life.

In any case there was no decision to be made about keeping her alive, she was going to die anyway, but I will always be left with the decision I made, not to try to save her.

In the end the birth was difficult and her heart stopped beating while she was part way out of the birth canal. I wish I had gotten to meet her, if only for a little bit. I don't know what it would have been like to watch her die, as you had. My feeling is that it would have been a more painful loss, but also a more meaningful one. But I also know that no amount of time would have been enough.
July 18, 2016 | Unregistered CommenterAna
Oh Hannah, I am deeply sorry for your loss of precious Sage.
July 18, 2016 | Unregistered CommenterJo-Anne
Thank you for your replies. It is nearly I'm possible to interact with anyone outside of this situation, nor do I have the energy or desire to.

I carry no regret about the treatment my son received. He had been through 5 incredibly high risk brain surgeries in the short amount of time that he was with us. Sage showed remarkable strength and resiliency and survived each one.
There were many various medical interventions made to save him, and so many doctors and nurses who were invested in his care and well-being wholeheartedly. I know from a logical perspective that everything was done to save his precious life, and ultimately allowing him to pass gently was the truest act of love we as his parents could perform.

I want to remember and feel in my body every beautiful moment that I had with him, because those did exist. But I keep coming back to the horror of that day, of knowing it was time to take him off the monitors, of the terror of each hour that it took for him to pass away. I think of what he sounded like and how he moved as I held him, and the knowing, innately, when he had fnally gone.

And I relive the moment I left him in the arms of our nurse, wrapped in my own baby blanket, over and over. I would have held him forever if I could.

For those of you that have experienced this, how did you learn to quiet your mind? Is there a form of distraction powerful enough to soothe this sting, even just a bit? Is it just a constant willing of self to focus on the beauty of our babies life, and not simply their unjust suffering? The quiet chaos of these memories feels too much to bear.
July 18, 2016 | Unregistered CommenterHannah
Hannah, I am so sorry for your loss. I didn't experience your type of loss - my baby died at 20 weeks gestation, but my heart is breaking for you and Sage.
July 18, 2016 | Unregistered CommenterEvie
I'm so sorry for your loss Hannah, and I know all too well what you are going through..

I was also faced with making an impossible decision. Our daughter was born extremely premature and spent a week without amniotic fluid before she was born. We decided on palliative care since her odds for survival weren't favourable, and it was most important to us that she wouldn't suffer. Although I know it was what was right for us and our baby girl, it doesn't take away from the pain of not having her in our arms. We had nearly an entire day with her where she was wrapped in our love, and I am so grateful we had that time.

Early on, the only thing I could do to stop my mind from racing and the tears from falling was exercise (and I'm not usually a very active person). It was the only thing that forced me to focus on something other than the trauma we had been through - it's difficult to cry when you have to focus on breathing.. Granted, I would often break down in the middle of it, but it provided a distraction at least for a short while. My husband was also very good at encouraging me to get out and take the dog for a walk with him. I wouldn't stop myself from going through the emotions, but sometimes, I just needed a break and these little things helped me snap out of it. At least somewhat.

I also felt it was important to write down our experience, to just get it all out. All of the anger I was feeling at how we were treated was typed out and felt like a release. Like you, I didn't want to be overcome by the horror of losing our baby girl, so I also dedicated a journal specifically for her where I write about the memories I have with her and thank her for all the love she gave us in such a short amount of time. I don't allow myself to write anything negative in that sacred journal, it's intended just for our baby girl and helps me focus on her and remember the beautiful moments we had with her.

We lost our daughter in January, and I think what helped us most was seeing a counselor in those early months. She helped provide perspective for how we were feeling and it gave us an opportunity to talk about our daughter without fear of judgement.

Again, I'm so sorry you had to say goodbye to your beautiful baby boy, Sage. Sometimes the most difficult decision is also the most loving.
July 18, 2016 | Unregistered CommenterMother to a Wild Rose
Oh Hannah. I'm so sorry. It's so unfair for a parent to have to make that decision. My husband and I made the decision to withdraw care after 2.5 months in the NICU when we realized if my son survived, his quality of life would be so bad that we couldn't make him suffer any more. Having to make that decision added so many layers to the grief and I struggled with horrible guilt and self-doubt for so long. Those early weeks and months were so hard and I constantly replayed it in my mind and constantly questioned every decision I'd made. It's been little over 2 years since he died. I now am at peace with the decision and know that withdrawing support was the most loving thing I could do for my son. Early on exercise helped--being active helped me process things while being sort of distracted. I went to therapy alone and with my husband and after a few months found a support group which helped immensely. It took a few tries for me to find a therapist who really understood grief and trauma, so if you go to therapy, I'd look for someone who specializes in that. The initial people made me feel worse, not better. The book "Loving and letting go" was helpful to me too. Much later on, I started meditating which helped me learn to be alone with my thoughts and achieve some degree of peace, but I couldn't have done that early on in my grief. Early on, I needed distractions because being alone with my thoughts was too painful. I'm sorry you are going through this.
July 18, 2016 | Unregistered Commenterg
Oh, and I know this sounds kind of crazy, but 4 months after my son died, we got a puppy and that is what really brought me back to some degree of normalcy. (We'd always planned on getting a dog after the baby was old enough) A puppy is obviously a really poor substitute for a baby, but part of my suffering was the maternal drive that had no where to go. I felt such a biological need to take care of a baby and of course, it's not the same, but having a puppy who needed care gave me some outlet. It was a great distraction for me and on the days I didn't want to get out of bed, I had a puppy who needed to go out or be fed, and it forced me to focus on something outside of myself and the terrible thoughts. A pet isn't for everyone, but I know other people who also got dogs or planted a garden or started a project and it seems like having something to nurture helps some people.
July 18, 2016 | Unregistered Commenterg
Thank you for your kind and thoughtful replies, I have taken all of them to heart.
July 21, 2016 | Unregistered CommenterHannah