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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 > Hope and Optimism¬†(lacking)

There has been some talk of hope and optimism recently, especially with my family around the new year, and it got me thinking... I had always considered myself a hopeful and optimistic/happy person before. Very much glass half-full, etc. Ever since ending our pregnancy I can't get beyond the fundamental lack of hope that got me to that decision. Our baby was given an incompatible with life diagnosis. But then we learned of one survivor. We found a hospital doing experimental treatment on babies with our diagnosis. They were willing to try, but were not overall optimistic about the outcome. We ended up terminatingat 23 weeks. As I try to get back to my "hopeful" place, I just keep getting stuck at the fact that the biggest decision of my life was made by NOT having hope. A hopeful person would have said that their baby would be the 1 in 10,20,100 (whatever the odds are) and survive. Wouldn't they? And how is it optimistic to say that we will just take death now, versus try for life? Our logic was, and still is, that we didn't want our baby to suffer for no reason. But don't hopeful people convince themselves that their baby will beat the odds? I dont even know how to identify anymore. Has anyone else had a similar dilemma?
January 3, 2017 | Unregistered CommenterAbby
Yes, Abby. Although our case was pretty clear-cut, I wondered why I didn't feel the desire to ask for prayers, or a miracle. I realize now both of those acts represent hope; of which I had none. I think the hardest thing in decision making is no do-overs regarding what you decide with fatal diagnosis.

I'm not sure if you are in a religious-minded area or family, but I believe messages of hope are rampant in these circles. If someone is sick, if something bad happens, there are always messages and pleas of hopeful change, different outcomes, and small or large miracles. But in my opinion- in reality, things just are what they are. And I think you probably knew the writing was on the wall. You had to be realistic to accept and decide. That doesn't make you a bad mom. That makes you a mom who loved and cared so much, you wanted to let your baby go. The reality of that is traumatic. It's all traumatic, no matter what you choose. (I was told time and time again carrying to term would be healing, but it didn't feel that way to me.)

I know you're processing and re-processing everything you did and didn't do. But one day, as I hope to, I hope you will let it all go.

I find myself less caught up in feelings of hope, good favor or fortune, because I don't want to be disappointed and prefer to live in a careful, measured way now. Our loss of hope and life events are just more heavy than many others, and how we interpret what's real and what's a pipe dream is up to us.

January 3, 2017 | Unregistered CommenterElaina
I completely understand, and have been there. My baby was born at full term and discovered to have a genetic disorder that is fatal in the toddler years, and up until that end, the life is filled with nothing but intractable seizures and profound mental retardation. She would have gotten absolutely nothing out of life, and would have been heavily medicated and suffering every day to have the opportunity to live. But still, I hear where you're coming from - we don't KNOW that she would have had such a terrible life, because I didn't give her that opportunity. I didn't medicate her and get second and third opinions, hoping that someone would have some revolutionary new information or that her case would be miraculously more mild than they anticipated. I listened to the conclusions of multiple specialists, did my own research which came to the same conclusions, and that was that. But every day, every hour it felt like, I would panic and ask "why aren't we at least trying? why aren't we seeing if the medications work? why aren't we giving her a chance to prove us wrong?" The answer that the medical team kept giving me was that she was getting no joy from life, absolutely no awake time where she would be able to interact with her world, even on medication, and the longer she lived the longer she would suffer.

We removed medical intervention when she was 2 months old and let her pass, "peacefully" as the medical team kept assuring me. That I was being a good, loving mother by choosing to allow her to pass peacefully in my arms instead of from the painful and uncomfortable result of her condition.

It's only been 3.5 weeks since I let her go, so I'm still coping and talking myself through it. But every time I go down a path of "what if" and "if I had only tried this," I ultimately return to the fact that it was in her best interest to pass when she did, as agonizing and heartbreaking as it is for me. As parents, it's our responsibility to make the hard decisions for our children, to protect them from harm. If we know that their condition would cause them harm, and there isn't any medical help to be had, we shouldn't allow them to suffer through it for our own benefit of feeling like we're trying or hoping for the best. And a doctor isn't going to recommend termination or removing medical intervention lightly - their goal is to provide a good quality of life to all of their patients. We are absorbing the hurt and the pain so that our child doesn't have to. I remind myself of that all the time - I am heartbroken today so that my daughter didn't have to live another day of constant seizures. Having her here was not for her benefit - it was for mine.

I'm so sorry you had to say goodbye to your sweet baby so early, and that you had to make the decision to say goodbye. That's the part that haunts me, that I had to decide to say goodbye. I still struggle with it, and have to remind myself daily that it was the right decision. You are a good mother for choosing that for her, and you're a good mother for choosing that for your family. I hope that you're able to find clarity and strength in your decision. I know firsthand how difficult it is.
January 3, 2017 | Unregistered Commenterwicket
That is also the part I struggle the most with. Rationally I know thatvitvwas the best decision, but it still feels like I gave up on him. I fee guilty for even knowing that it was the best thing to do. My husband does not understand it at all. He looks at what the Dr.s told us as fact-my son was so brain damaged that he would likely never walk, talk, eat, or even see. On top of his heart condition that would require three open heart surgeries with not very high success rates. But I think -maybe we should have tried, maybe they were wrong, maybe he could have been ok-you always hear about these things. Then I have this other hidden guilt, I almost had a sense of relief when I found out about the brain damage. Imagining what a year of hospital stays with my infant who liked could die at any point would tear apart my family-when would I see my daughters (only 1 & 3 at the time), how would we financially do this? Would my marriage survive? I have myself for even thinking these things and think he should have a different mom-someone more deserving, someone stronger who would have fought harder for him.
January 4, 2017 | Unregistered CommenterSad momma
All- thank you for responding. It's interesting that so many others have the same reaction, even though from all the details you have shared (at least to me) it sounds like your situations were fairly clear-cut. Wicket - knowing what you have shared about your baby's diagnosis I can't imagine having made any other decision.

Elaina- I am not a religious person, but I am in a Facebook group for families affected by Potters syndrome where many of the members are. Out of hundreds of members, a vast majority choose comfort care. Some induce early, like we did, and very few I have found try for aggressive treatment (of those, I have found one whose daughter is still alive). What I can't relate to often is that many of the people who choose comfort care talk a lot about hope and prayer, but don't seem conflicted about not choosing medical intervention. Obviously I understand not choosing intervention, and frankly one needs to do a lot of homework to even know it's an option, but I cannot relate to the lack of conflict about the decision. It has made me wonder whether having faith helps with some of that.

My therapist says that maybe my "hope" wasn't for life when those odds looked so grim, but that he wouldn't suffer for no reason. Not sure how I feel about that yet.

Sad momma- when we went to see the specialists to talk about possible intervention for our son, I remember hoping (there it is again) that they would either tell me he had a decent shot (this was 20% in my mind... somewhat arbitrarily chosen) or that he wouldn't live no matter what we did. Of course no one would put his odds at 20%, or even give us odds at all, and no one could say he would definitely not make it given the one success story that was out there. I hate that I thought this since I always thought of myself as the kind of person who would try everything even with small odds (and win of course!) but when the reality set in, I just wanted God/someone else to make the decision for me.
January 11, 2017 | Unregistered CommenterAbby