I have debating posting my story for a while now, since I know our story is taboo even among the taboo of babyloss. We terminated for medical reasons almost six months ago. Our baby was diagnosed with bilateral renal agenesis (no kidneys, causative agent for Potter's syndrome) at our 20 week ultrasound. When we got the diagnosis, the doctor said it was a fatal condition. Same thing at our second opinion. We did some research and were able to find a highly publicized story about a survivor 3 years ago. We chased this story by calling the doctors in the articles, doctors referred to by those doctors, etc. We were finally able to find a hospital that would treat me, but the doctors there were not optimistic about the outcome: they had tried aggressively treating four babies, none of whom survived beyond some number of months. When we added up our baby's odds of survival, they looked like 1 survivor out of ~16 (only counting the babies who try aggressive medical treatment, which aren't many. Most families choose to terminate or have comfort care.

I really struggled with the decision and went back and forth about a hundred times. Ultimately, our logic was that if our baby was going to die, we wanted him to go as peacefully as possible. Treatment would have involved a lot of intervention for him. We thought about seeing what shape he was in when he came out, but I didn't trust myself to know when to go to comfort care if he wasn't doing well. I feel so guilty about this. Almost six months out, I have some days where I think we made the right decision, and some days where I really regret not giving him that shot at a life.

We chose to deliver him early at 23 weeks. He lived for about an hour, and I don't think he suffered, although I will never really know for sure.

Anyone out there had to make the same or similar decision? I always thought that if someone was sick I would try everything to make them better - the costs of trying just seemed so high for our baby.

Abby, I'm so sorry for your loss. It must have been the most difficult decision of your life, but please don't feel guilty. You've really looked into this to make sure he had no chances, so it wasn't a decision you've jumped in to. Having found out your baby had a very low chance of survival and very poor quality life (and possibly a short one), I sincerely believe you've made the right decision for your baby by not letting him suffer. He only knew the warmth and safety of his mother, and the love you and your partner had for him. He didn't have to go through the pain that comes with any intervention, no matter how respectfully and considerately done. You spared him pain, and you spared yourself the pain of watching him go through all that helplessly.

Our son was stillborn 1 week after he was diagnosed with a syndrome that meant he would not survive. We were told he might be still born or might die shortly after the birth. He was stillborn and never took a breath. I am kind of glad to know he did not suffer. Nothing is a relief when you lose your child, but after reading all kinds of stories I'm grateful for this. He went in peace, and knowing this really helped me in my grieving and healing.

I really hope you will feel better soon, and just cherish the memories of your pregnancy and the 1 hour you got with him. Sorry I'm not very articulate (English not my mother tongue and I'm at work), but I just wanted to respond and hope this will help you at least a tiniest bit.

Oh, Abby, I am so sorry you lost your baby and that you had to make this agonizing decision. It is blatantly clear from you message how much you love your son, how much you wanted him, and wanted the best for him. You had to decide among several heartbreaking options, that's not really a "choice", it's just navigating a tragic situation the best you can. You took the path that you thought was best, that your loving mother's heart guided you to. Please don't be hard on yourself. And remember, no one has any right to judge you, they have never been in your shoes.

Our circumstances are different, but my husband and I also had to make a devastating decision. Our first son was born with severe and extensive brain damage after I suffered a placental abruption at full term. He survived in the NICU for 8 days on life support. When the MRI revealed the extent of the injury, and he didn't have as much as basic reflexes, we decided to withdraw life support and let nature take its course. There is a chance he may have survived if we continued with aggressive intervention. But absent a miracle, he would have been unable to move or form meaningful relationships, possibly living in pain. I couldn't do that to my son. I wouldn't want that for myself, I wouldn't want it for anyone I love. That was five years ago. I also struggled a lot with guilt... These days, I am mostly grateful that I could at least do that for him - spare him more pain and suffering. I know others may feel and act differently in our situation. I don't know what's right or wrong, and I can understand the rationale for doing "everything possible". I just know what was right for me, and that I love my baby no less for letting him go. I miss him every day and still grieve for him (although that part gets easier too), but I don't really feel guilty about our decision any more.

I hope you can make peace with your choice and treat yoursefl gently. Once again, I am terribly, terribly sorry for the pain you're in.

Abby,

I am so sorry that you have to experience this loss. I'm also so sorry that you have to carry the burden of this decision. About a year ago, my daughter Emily was stillborn at 30 weeks when her heart stopped beating. In the weeks before, we had received a devastating diagnosis (a mass in her chest that grew too large for her heart and lungs to develop normally), many second opinions, specialists, etc. I had also looked into our options for a compassionate termination, but was too far along for most options.

I can imagine how hard you worked to find any information that would help you in your decision. I don't know what it will be like for you but I can tell you that I find comfort in the fact that she died peacefully. I am so sorry that she isn't here with us, but I am grateful that her last hours were with me and not receiving unnecessary medical interventions. I hope that you have people to help you and support you. I don't think that your story is taboo - I think that yours is a story of a mother who did the very best she could for her baby.

Abby,

I am so sorry for your loss.

So many things come to mind. First, so, so often we read on here about perfect babies and the tragic accidents that took their lives too soon. I can never quite fully understand that, because my baby was so imperfect. How does that change my loss? Should it make it easier to accept? Do I struggle more with guilt or getting pregnant again because my baby was not healthy? How do you carry or not carry a baby you know you will lose? How do you choose termination or not, comfort care or intervention?

I had to make a decision at 20 weeks when our daughter was diagnosed. I ended up carrying, but I am not sure why. There were so many factors in our decision. Some days I see it as dignified and honorable, other days I think it was absolutely crazy as I ended up insanely depressed for the months leading up to delivery and a c-section. I will say, I found delivering early quite different than "terminating", and did not like how they were grouped together. Our hospital would not allow an early delivery before 27 weeks due to their religious stance on viability. The red tape surrounding delivering early in cases of fatal diagnosis astounded me, and hurt me.

I struggle with guilt. A year or so out, I decided I had to make as much peace with the fact that I had no good options. I truly don't believe there is a right path, but a path must be chosen and in that will be both good and bad. Eventually, when I was in pain and it was time to deliver (30 weeks), I had to think of myself as life support; sometimes the most loving thing to do is to let go. However a women lets her baby go in this situation is up to her and is the best way she can cope at the time in horrible circumstances. Following that decision, I think we will always wonder about the other decisions but we have no do-overs.

You love your baby and did the unthinkable with as much courage as you could muster. You're amazing.

Dear Abby,

We live in a crazy and at times senseless world. I do not doubt for a second your love for your son. Sending you love and empathy.

Abby, thank your for posting this, although I'm sorry you find yourself a member of this shitty club - three years ago today we got the news at our 12 week scan that our daughter Stella had anencephaly, a condition "incompatible with life" (how I hate that expression) so my mind has naturally turned to going over things for the millionth time again these past few days...

Like you, after two weeks and a lot of soul searching we decided not to continue the pregnancy, and Stella was delivered on16th November 2013 at 15 weeks - she fit in the palm of my hand, and I was shocked by how perfect her wee body was, right up to the top of her head which was not so perfect given her condition.

three years out, I still struggle with doubt and guilt, altough deep down I know we did the best we could for our girl. For me, it ultimately came down to affording her dignity and respect in her delivery, and protecting her from any pain, or vain struggle for life should she be born at a later stage. We were told we could lose her at any point, so the thought of cotinuing with a very visiable pregnancy, then going into labour somewhere out and about, with no control over the circumstances somehow made things worse, as if they could get any worse. It was also important to me to be able ot see her, and hold her and name her. In truth, her delivery was peacefull and I take a lot of comfort in that.

I do struggle with where I fit these days, even in the babyloss world. I didn't have a miscarriage (although i have since, another wee girl at 10 weeks), and she wasn't stillborn...It was technically a second trimester loss, but only becuase i "chose" that. we might have gone to term, who knows, and then how would we described ourselves? It's so very difficult to explain to anyone who hasn't experienced it, so in some waysI can undertand how difficult it must be to relate to - I think you're right that it's probably the least talked about type of babyloss, and that is very isolating...

You commented about always thinking you'd do everything you could to make someone better, and someone on this thread referred to life support - that's how I like to think of it. I was my baby's life support system, and when it became clear the fight was just too hard for her, we simply turned it off. I also read somewhere (I think under the "medical termination" topic on Glow- if you haven't already seen it, that might be worth a read) that one mum made the choice to take the suffering on herself so her child didn't have to - that also strikes a chord with me.

The element of "choice" I think is the cruellest thing for us to bear - on top of all the "normal" emotions that come with a loss, we have a special type of guilt to add to the things we can beat ourselves up about.

Thank you for starting this conversation - I think it's a difficult topic to raise, even among friends here at Glow. Please know you are not alone, there are a few of us on here who've been through similar and get it...

Lx

Thanks everyone for your replies. Although it's awful that anyone has to experience this, it is comforting to communicate with others who have been through something similar. Six months out, I am still researching to see if we missed some information that would have changed my baby's odds. There is no point, of course... as Elaina pointed out, there are no do-overs. I am just struggling with what "acceptance" looks like. Some days I can feel it hovering nearby. Other days (like this past week) it seems completely out of reach. I am worried that as my pendulum of emotions swing back and forth, it is going to settle out at regret. I do hope years from now I will be able to offer some words of comfort to someone like me. And that I will be able to tell them that the guilt and regret will pass.

Abby, we were in a very similar situation. I'm so sorry. The guilt is so crippling especially in the early days. Have you got a good therapist? I needed concrete strategies to direct my thinking a different way before I could let the guilt go. Big hugs xx

Abby I'm very sorry. My husband and I took the same choice, I was 20 weeks pregnant. Just published my story on this forum. I still feel guilt sometimes, most of all I miss her so much. I'd give my life for her to come back healthy.
It's not the same after such a choice. We decided to let our baby go, we both suffered at his/her place, and we carry on anger and guilt and sadness. Know that you were very, very brave. A great mum. Hugs.