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Bereavement

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Trisomy 18 - My heart is broken

133 replies

MillyH · 25/09/2007 13:01

Last Friday I waved goodbye to my little boy, born at 22 weeks after termination due to trisomy 18.

I still can't get over the feeling of grinding, crushing awfulness. I think I just need someone to listen to me.
Never has my life changed so much in just one week. Last Monday DH and I went to the 20 week scan happy burbling parents to be arguing about whether or not we wanted to know the sex. The sonographer explained that there was something wrong and would refer us to Kings. She described some of the symptoms and when I said Spinabifida she told us, in so many words, that it was worse than that. I walked out of that scan knowing that I wouldn't be pregnant by the end of the week and have been crying ever since.
I signed his death warrant at Kings the next day, after they diagnosed Trisomy 18 and being told he probably wouldn't make it to term and if he did he'd only live for a few minutes. DH and I had spent the last 24 hours praying for an easy decision and that is what we got. No matter how much you know the decision to terminate is 100% right for you it doesn't make having to do it any less horrible. That's where Kings failed - the doctor who came to see us about our decision seemed utterly incapable of describing the process of termination to us when we asked. I think he either just wasn't brave enough to explain that I would have to go into labour, or regarded as some kind of midwife thing that wasn't his area. He did just manage to explain about the fatal injection when we asked.
I was then referred back to my local hospital on Wednesday for the first set of tablets, and then there were two agonising days crying, deadness and time-filling before going in on Friday to have him.

The process itself wasn't as bad as I thought and for me the labour wasn't to painful. Almost like labour in minature, just as my son was a baby in minature. An achey back, then some grumbling period pain aches slowly getting worse, and then pushing him out was a over in a couple of minutes. He was tiny - only 230g at 22 weeks so I knew he'd never have made it. You could see some of abnormalities - mishappen head, strange face. My husband found it hard to look at him, but I was surprised to find that I could. If his mum couldn't look at him then who else could? At least I had that half hour with him to feel like his mum, to tell him how much I loved him , and tell him that his dad and sister loved him, and his grandparents loved him. And to sorry, that even though I was his mum and there was nothing I could do for him.
Now I am just crying and crying - I just can't talk not even to friends. It's all so raw that I just cry and can't speak. I'm angry that all those months carrying him were a waste, and angry that this wasn't this picked up at 12 weeks (Nikolaides at Kings said it should have been). But worst of all I miss him so much, I miss the cuddles we would have had, I miss the times he would have sicked on me, I miss him crying when his sister nicked his toys. I know this will end but it is so hard at the moment.

OP posts:
MrsJohnCusack · 25/09/2007 23:07

Milly, another teary one here. I am so sorry for your loss, and your family's loss. I hope all the wonderful advice from wonderful mumsnetters on this thread helps you. I couldn't not post.

As Marina says, your posts are so full of love. PLease keep talking as much as you like and we'll be thinking of you.

NoNameToday · 26/09/2007 00:41

Dear MillyH

What a beautiful tribute to your son.

Thank you for having the courage to share your sorrow.

pinkrangerstartstowaddle · 26/09/2007 12:02

im so sorry for you loss milly

fryalot · 26/09/2007 12:06

what a beautiful tribute to your little boy

FoghornLeghorn · 26/09/2007 12:08

How utterly utterly devastating.
I don't know what to say Milly.

Thinking of your lovely little boy x

goingfor3 · 26/09/2007 12:11

MillyH I'm so sorry to hear about your precious son. I lost a baby at 20 weeks 7 years ago and I will never forget him, all babies are very precious.

Baffy · 26/09/2007 12:17

So sorry for your loss milly, how utterly devastating.

Keep posting here and when you feel up to it you know there is support out there to help you through.

daisyandbabybootoo · 26/09/2007 12:22

MillyH, I'm so so sorry for your loss

hazygirl · 26/09/2007 14:35

millyh so sorry for the loss of your son, he will know how much he was loved by his wonderful familyxx big hugs

Nemo2007 · 26/09/2007 14:43

Milly I am so sorry to hear about the loss of your baby boy.It must be especially hard with having your little girl.

BundleBrent · 26/09/2007 15:08

Milly.
I am so sorry for your loss, I was sitting here feeling a bit sorry for myself, and have realised that there are people with something really to feel upset about at the moment.
I am heartened by all of the responses you've had, and how everyone wants you to know we are all thinking about you. Me to.

ladylush · 27/09/2007 11:55

MillyH - I am so sorry for you and your family I also had tears reading your post. Friends of mine had a still born baby and found SANDS very helpful but it was a while before they could pick up the phone.

ClairePO · 27/09/2007 18:29

Milly, I'm so very sorry for your loss

MaryAnnSingleton · 27/09/2007 18:32

MillyH - I'm so sorry - that was heartbreaking to read, you put it so sim ply and well - I can't imagine your pain but send a big hug

munchkinmum · 27/09/2007 18:50

Just heartbreaking.

Thinking of you, your husband and your little boy.

Take care.

3andnomore · 27/09/2007 19:03

(((((((((((((((((((MillyH))))))))))))))))))))
I am really sorry that you had to go through this.
I remember , a fair few years ago, a girl down the street having to make the same decision for the same reason (Edwards Sybdrom)....and I know she was heartbroken , which is natural, and also terryfied at teh time..again completely natural!
It couldn't have been picked up at a earlier scan , but I can understand your resentment...

I know this is no help to you right now, but the girl I knew fell pregnant very quickly and had a beautyfull little Baby then, and whilst that Baby would never ever let them forget their first child that they could have had, they were able to move on and have a happy life...but it does take time to move on...again, only natural...give yourself time, talk when you need to, and be kind to yourself!

Peachy · 27/09/2007 19:04

I am so sorry for your loss, and moved by your beautiful explanation of the love you had for your darling child.

With love X

Jacanne · 27/09/2007 19:08

God, I am so sorry Milly. I also cried when reading your post. Sending you and your husband best wishes. Don't bottle up how you feel - make sure you talk about it and your little angel, particularly with your husband.

Callmemadam · 27/09/2007 19:49

Milly I, too, am so so for your loss. Please remember that you gave your son the ability to depart this life without the trauma and fatal struggle that would have come with birth - you gave him a wonderful gift which was to leave in peace. You held him in your arms and he will live for ever in your hearts. But life does not stop with this shock but goes on, and new life may spring from your dh and you without diminishing that of your baby son's, for he was there too. I hope that peace will grow in you in time. Please stay close to your dh, it is a testing time and although he may seem to be coping better than you he may be suppressing a lot to stay strong for you and your dd. My love to you all.

MillyH · 27/09/2007 21:24

Thank you everyone for all the messages. Thank you for talking about my little boy, acknowledging that he was here and a special thank you for those who shed a tear for him. It is so important to me. I am going to print out this thread and put it in his box, with the photos and foot prints. I am sure it will help me on bad days in the future.

A friend of mine came round yesterday and actually asked about him and whether I'd had the chance to say goodbye. It made such a difference. Today has felt a little better - my head is above water some of the time.

OP posts:
TotalChaos · 27/09/2007 21:32

Very sorry you lost your little boy.

daisyandbabybootoo · 27/09/2007 21:35

millyH, again so sorry for your loss.

with regard to the treatment you received and lack of understanding from the doctor, it might help to talk to the patient liaison service at the hospital. Maybe not now, but when you feel up to it.

You are being incredibly brave.

hugs xx

mrslurkalot · 27/09/2007 22:13

Milly, I am so, so sorry for your loss, my heart goes out to you and your family. It is clear how much you love your little son, and you always will. I cannot imagine the pain you must be feeling, and I hope that you are getting all the love and support you need and deserve. xxxxxxxx

KerryMum · 27/09/2007 22:19

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KerryMum · 27/09/2007 22:20

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