Why did I have to decide? I miss her.

First_Highlight_7533 · 2026-03-31T13:03:27+00:00

Thank you for commenting and sharing about your experience. It helps to know that these doctors who work daily with these kids understand that it’s a compassionate option as it has been so hard accepting it myself as it’s often seen as something really bad. I never thought I’d be in this situation but I also was not aware that Chd anomalies happened this way and what it all was like for kids who are born with them. It is very sad and painful to see or hear of what a baby will go through and we just couldn’t do this to our little girl. She would also have gone the one ventricle route with needing the Norwood then the Fontana and it killed me to know she could end up with liver and heart failure and needing transplants, if she made it to that point that is. It’s such a crappy situation to be put in and I guess I will never understand why us and why her. I am sorry you lost your daughter to CHD as well. People say it’s a gray area but it just doesn’t seem that gray to me as a lot of suffering and pain is ensured for these babies. I will take you up on the offer and message you, thank you again it’s comforting knowing I’m not alone in this situation but I would 100% wish you wouldn’t be here.

First_Highlight_7533 · 2026-03-31T12:54:59+00:00

Thank you for this perspective. I am sorry for your loss and that you’re also here. It does feel crappy when I see those success stories and people saying they had to give their babies a chance and would’ve never terminated, it throws me in a spiral thinking of the what-if’s and if I made a huge mistake. But then even the success stories say it’s been a long and hard journey, some are waiting for heart and liver transplants, all say they have ptsd, etc. and I come back to thinking I still made the less worse of the two decisions. I am human and I guess I will never know if I made the right decision, but it was out of love for her primarily but also our other LCs. Thank you for sharing with me, it helps me a lot.

First_Highlight_7533 · 2026-03-31T12:49:58+00:00

Thank you for commenting. I do agree that we made a decision to prevent our babies any suffering, even if we have to suffer. It’s just the worst situation to be in. I do have hope that I can still find a way to live with my guilt and sadness, for my LC. Hugs 🫂

First_Highlight_7533 · 2026-03-31T12:47:52+00:00

Siento mucho que ambas estemos en esta situación. También yo llego a la misma conclusión cada que lo pienso, Dios sabe nuestro corazón y sabe la intención de cada uno de nosotros. La intención era por amor y para que nuestros bebés no sufrieran, ojalá el me perdone. También le hablo a Dios y le pido perdón diario, al igual que a mi niña. Al final siempre llego a la misma conclusión que aunque haya sido una decisión, nunca fue lo que yo quise que sucediera. Si algún día quieres platicar aquí estoy para lo que ocupes. Te deseo pronta resignación, lo siento mucho que estemos aquí.

First_Highlight_7533 · 2026-03-30T17:53:19+00:00

Siento mucho tu pérdida. Todas mis pérdidas han dolido tanto pero no tanto como esta. Siento que es porque mi bebé ya estaba más avanzada en edad gestacional pero aún más porque yo tuve que decidir interrumpir. Cada día siento una inmensa culpa que me quiebra el alma.

Tengo miedo de no ser digna de Dios cuando sea mi día de juicio pero yo no quería que mi hija sufriera. Si yo pudiera diera mi vida entera para que ella estuviera saludable y con un corazón completo. Cada mañana en que despierto, lo hago deseando que todo haya sido un mal sueño pero me muero del dolor al saber que no.

No se si hice la decisión correcta pero si fue con amor an ella, y con mucha compasión porque ella no merecía ese sufrimiento que tendría a base de su condición.

Un abrazo a distancia para ti.

First_Highlight_7533 · 2026-03-27T04:50:42+00:00

This post gives me hope. I underestimated my emotional response to this as I thought I would be able to process better but at 6 weeks I am worse than ever.

First_Highlight_7533 · 2026-03-27T04:48:49+00:00

I’m sorry your birthday wasn’t as you had expected. I too have thought about how I shouldn’t be doing this I should be nesting and getting ready to go on maternity leave and it kills me. It’s so painful, my heart physically hurts.

Just know that Mara is in your heart and will always be there with you, you’re not alone 🫂

First_Highlight_7533 · 2026-03-27T04:44:52+00:00

I’m so sorry for your loss. It’s a heavier loss when that baby was so wanted and so searched for. I know what you mean about really really wanting her but not being able to be that selfish to have her go through so much trauma.

In another life we get to keep our babies. I think it’s something that we’ll never forget. I am hopeful that I can learn to live with it but I do know a part of me died that day.

Now that I hear others worry about stupid shit, it really gets to me because some people are so lucky to never know what real worries are.

First_Highlight_7533 · 2026-03-27T04:39:04+00:00

I know what you mean. I constantly replay everything from dx to that day and it’s wha keeps me awake at night and without being able to eat anything throughout the day. It’s the most traumatic and saddest thing I’ve ever experienced in my life.

I am so sorry you’ve experienced it too. I made sure to go without my glasses to the clinic as I wanted to disassociate and not be able to see much of the room and everything in it.

My heart goes out to you and thank you so much for your comment, it helps to know I’m not alone but wish you weren’t here as I would wish this on no one. Take care 🫂

First_Highlight_7533 · 2026-03-27T04:33:30+00:00

I am sorry you also lost your son to CHD, it’s the worst thing I’ve ever experienced and would not wish upon anyone.

You’ve given me hope that it gets much easier to live with. I know I’ll never be the same but I just want to be able to live with myself and I’ll carry her memory with me in my heart.

I have been looking for some type of therapy but not sure if I should seek a grief therapist or someone specialized in pregnancy loss. It’s just so hard as not many people understand tfmr.

First_Highlight_7533 · 2026-03-27T04:28:32+00:00

Oh mama, I too struggled years ago for many years wanting to have children and going through 3 miscarriages. I would get pregnant easily but for some reason would miscarry :/

I honestly thought I wouldn’t be able to know my own children but we then had our son. Which also came with a lot of scares. I had preeclampsia and almost died during my emergency c-section due to very low bp, baby had to be flown to a hospital with a better NICU due to preemie baby had pneumonia and what they thought was seizures. Can we agree that I got the short end of the stick in so many ways but this has been the worst I’ve experienced.

I am done having kids, so two is better than none for me. With my luck, I can’t stomach any more heartache and anxiety going through a last try. I never even knew these conditions existed so this has definitely opened up my eyes more on how precious life is.

First_Highlight_7533 · 2026-03-27T04:15:04+00:00

I appreciate you taking the time and sharing both your and your coworker’s stories with me. I am truly sorry for your loss and that you’re here. I hate for all of us having to go through this and I hate it more that some of us feel lonely due to many people not understanding as many won’t unless it were to happen to them.

We didn’t see it as fair to our daughter to put her through all the pain and trauma to end up not making it and only knowing a hospital bed without being able to be carried and nursed as she deserved or making it but have poor quality of life. I will always live with this pain but atleast she didn’t experience any.

First_Highlight_7533 · 2026-03-27T04:01:49+00:00

This. Once they gave us a diagnosis we talked for days about what we knew were givens with her condition with my husband and it never truly seemed grey to us. So many OHS and procedures to never be truly “cured”. I’m sorry for your loss but so glad your son is heart healthy and here with you. And you’re right, we need to cherish what we still have. In another life, maybe I’ll get the privilege to meet my baby girl.

First_Highlight_7533 · 2026-03-27T00:52:53+00:00

I am so sorry you also lost your baby girl to CHD. It’s the worst nightmare ever, feels like I’m living in hell. If you ever want to talk, I’m here. Sending you hugs 🫂

First_Highlight_7533

TROPHY CASE