We had to say goodbye to our baby and my heart is broken (TfMR spina bifida)

[AlexaPlayWhiteNoise]

It was such an awful week. Anomaly scan on Monday, worst case scenario confirmed on Wednesday. Incredibly poorly baby and comments like "incompatible with life" and "unlikely to survive" and that was with major operations and invasive procedures.

So we chose to let him go, we didn't want him to suffer. And when I got to the hospital my cervix was already open, so they thought we would have lost him naturally anyway very soon. And he was born, and he was so strong, he lived for an hour and a half at 21 weeks and four days gestation. He was a miracle. And we heard his heart beat thudding away. And then it slowed, and he passed. And I can't bear my grief and sadness.

I'm on day 3, so post birth hormone crash as well as the loss of him. But it's making me want to throw myself off something high.

I'm being a shit Mum to my eldest boy, who is almost four, and doesn't understand what's going on. I couldn't even grow his little brother properly without causing catastrophic damage.

We're going to see him this afternoon, to say goodbye properly, and wrap him up and tell him how much we love him and how desperately we wanted him. It all feels like a bad dream.

I'm so sorry. Sending you lots of love. Be gentle on yourself

@AlexaPlayWhiteNoise If it's ok with you, I'm going to go and light a little candle, and think of Louie, my son Thomas, and all the other children mentioned on this thread that weren't able to stay with their families for long, but will live in their hearts forever.

Keep breathing, keep putting one foot in front of the other, keep talking to those around you, allow yourself to grieve in whatever way feels right.

Alexa, I am so sorry. Your pain radiates from your posts, but so does your deep love for Louie. I hope that in time, the latter will overshadow the former

Hi again Alexa, I'm not sure if you've been able to yet but do check out the Arc forum, I poured myself out on there and got lots of responses that seemed to help share the burden a little.
Also I personally really underestimated grief and what it would do to me. I would cry, shout, get so angry, rage, breakdown. Please don't try to hold any of this back, let it out, let it go, use it to feel your pain/anger/however your feeling.
Thinking of you.
Please feel free to message x

Thank you everyone who is contributing. It makes such a difference. Just to have somewhere I can be honest.

I've felt more numb this afternoon. I'm really trying to be a good mum to my biggest boy who means the absolute world to me. And it feels like the light has gone out. I'm scared of something happening to him now. And then I think, well if he died, then at least I could die and we'd all be together. My DH is amazing but he's back to work on Friday and I don't know how I'm going to manage over the weekend. My boy has always been my everything, and now it feels like I'm broken and split. Then I think, well if I'm this shit at being a Mam to two babies then I had no business having two babies.

I have to move my darling boy to the mortuary tomorrow, i think I'm going to be the one to carry him. His eyes have gone darker but they're not sunken yet. But the coroner hasn't signed off to release his body so I can't plan. I just want to bring him home. I'm scared he's going to physically deteriorate very quickly and that I'll still want to see him and love him and it will break my heart further.

I feel fortunate that I can't eat, but I am managing to sleep. No dreams anymore though. Just darkness. When I was carrying him I was having the most colourful dreams.

I will light a candle for my Louie, your Thomas, and all the babies who should still be with us. They are so loved, and so missed.

@tainot

Hi again Alexa, I'm not sure if you've been able to yet but do check out the Arc forum, I poured myself out on there and got lots of responses that seemed to help share the burden a little. Also I personally really underestimated grief and what it would do to me. I would cry, shout, get so angry, rage, breakdown. Please don't try to hold any of this back, let it out, let it go, use it to feel your pain/anger/however your feeling. Thinking of you. Please feel free to message x

I have joined the arc forum and the sands forum today but the arc login wasn't right. So I've got to wait till tomorrow now I think to remedy it.

Are you sure you don't mind if I message you?

I thought I'd felt grief until my little boy died 8 hours after birth. There is nothing that comes close to the pain of losing a child.

OP, I am sending you so much strength. You will find you are stronger than you ever imagined you could be and you are the most wonderful Mum to both your boys 💙

I’ve also experienced similar, albeit it at 17 weeks, not 21. I’m now nearly four years down the line and I can tell you I can talk about it now factually and without upset. There are some words that I find triggering so I avoid those words and instead use ‘pregnancy loss’ as somehow that hurts me less than miscarriage or ‘termination for medical reasons’.

I know you know but to reiterate this was NOT your fault. You didn’t screw it up. You are NOT a shit mother and incase you feel shame (I did for some reason) you have nothing to feel ashamed about. I also want to say people do not pity you as I was convinced for the longest time I was pitied for what I went through and it went along with the shame I felt.

I don’t really know what I did to get through it. I think it was just a case of time healing my wounds and being extremely grateful for the blessings I have. By the way I know the nights are very dark and long when you’re grieving. I coped by just getting up at 2am when I would wake and remember what had happened. I’d go downstairs and watch trash TV for an hour or so and go back up when I felt tired again. Do not lay in bed churning things over in your head, just get up and fill your brain with something else.

I don’t know if any of that helped but I want to say I’m extremely sorry for your loss ♥️

@AlexaPlayWhiteNoise you're not being a shit mum at all. Every possible emotion is happening to you just now and none of it is your fault. Your son will understand that mummy isn't very well just now but she will be. I was in a very similar situation in March, when I lost my twin boys at 22wks. Grieving in lockdown is horrific! The ARC forum was a godsend in those early days. I can't say when it will get easier but it will. Huge hugs from me xx

OP thinking of you how awful

Of course, message away. X

OP this a million percent not your fault. I am so sorry that you've lost your beautiful little boy .

So sorry for your loss OP . Sending you much love.

Such sad news thinking of you op, I hope you can hold your boy for as long as you need to. Can’t think of anything more difficult.
My friend lost her baby at 8 weeks old to T18 8 years ago, he was the most beautiful baby & we talk about him a lot. Lean on your friends if you need to, it’s what we are there for. Is there someone you can ask to come to sit with you over the weekend. Don’t be scared to tell your husband if you’re not coping, am so sorry once again for your loss Louie is a beautiful name

This week had been so up and down. My tiny boy was released and now he is at the funeral directors at the end of my road.

Thank you for your stories Kiki and justanother. I really do appreciate it. And everyone who had commented.

My milk came in a bit yesterday, which is shit. I thought I'd avoided it because it's been nearly a week. It should be for feeding my boy. And I put him down, I should have held him every moment he was alive, I should have told him every second how much I loved him. And I put him down, I even fell asleep for five minutes. Why did I do that? I slept while my boy was alive. He was breathing, and I didn't hold him close to me.

it was your body taking over... you must have been truly shattered physically and emotionally so I’m not surprised you passed out ... I wouldn’t call it sleep. Be kind to yourself, there is no blame, you did everything you could, you are doing all that you can now. Your beautiful angel boy is loved, and I’m sure he felt that every moment of his existence. Big hugs op x

I'm so sorry
I had to make this awful decision last year at 22 weeks.
It's one of the hardest things you will go through in your life and the first four weeks you will feel numb and like your not here.
I hope you have good support around you and time does make this easier xxx

@AlexaPlayWhiteNoise

This week had been so up and down. My tiny boy was released and now he is at the funeral directors at the end of my road.

Thank you for your stories Kiki and justanother. I really do appreciate it. And everyone who had commented.

My milk came in a bit yesterday, which is shit. I thought I'd avoided it because it's been nearly a week. It should be for feeding my boy. And I put him down, I should have held him every moment he was alive, I should have told him every second how much I loved him. And I put him down, I even fell asleep for five minutes. Why did I do that? I slept while my boy was alive. He was breathing, and I didn't hold him close to me.

Alexa you had the courage to hold your boy. I could even do that. I didn’t have the courage to give birth, I just couldn’t. I don’t know if I regret that or not. All I know is you are an amazing and strong mummy and you’ve gone through something that most people couldn’t even imagine.

I’m so sorry for your loss.

I'm so sorry
Praying for you all xx

Alexa I have read your thread and I cannot imagine how sad you are feeling. I really genuinely send you love and strength and hope you and your husband are getting lots of love and support.You will always be a Mum to two boys 💐Xx

How are you Alexa?

Ups and downs still bearly. His service is tentativelyplanned for Friday morning. My dad keeps going on about "closure" and I'm like, Dad, he's my baby, it's not about closure, I'll never get closure, I'll just learn to live with the grief, and it will get further away.

Justanother you did what you could for your little bean, on your worst day. You are amazing xx

Thank you to everyone who has been so kind, I really do appreciate it ❤️

I'm sorry to reignite this thread.

But a month ago, on the 3rd of December, my boys little sister was born. At 15+1 and with the same problems as her brother who she joins in the stars.

I've been keeping it together in the day, and then drinking a lot at night. I'm struggling so much. But it's my own fault. I grew them both wrong, and made the choice to say goodbye to them both. No real choice, they'd both have suffered until they died. And I couldn't do it to them. They didn't deserve to suffer. I never wanted them to hurt.

I'm so sorry @HeyFloof. You haven't done anything wrong and this isn't your fault. Do you have much support around you?