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Trisomy 18 - My heart is broken

(134 Posts)
MillyH Tue 25-Sep-07 13:01:32

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.

oooggs Tue 25-Sep-07 13:04:09

I am so sorry sad I hope you find the support you all need. Thinking of your beautiful baby boy x

saggarmakersbottomknocker Tue 25-Sep-07 13:05:17

Oh sad I'm so very sorry Milly.

tortoiseSHELL Tue 25-Sep-07 13:05:43

I'm so sorry Milly, what a heartbreaking time for you sad x

ScoobyDooooo Tue 25-Sep-07 13:05:50

I am so so sorry for your loss, i am sure people will be along soon to help you more than i can but i wanted to send you my love sad xx

lulumama Tue 25-Sep-07 13:06:30

SANDS is a good resource

I am so terribly sorry, how utterly heartbreaking for you.. it is still early days, you need time to grieve and to start the process of coming to terms with what has happened.

am so sorry for the loss of your baby boy sad

splishsplosh Tue 25-Sep-07 13:06:39

I'm so so sorry. I understand you've lost not just your litte boy, but the future life you were expecting to lead with him. My heart goes out to you xx

hotcrumpets Tue 25-Sep-07 13:06:53

I am so very sorry for you sad

I really hope somebody else will be along soon who has some better words or advice

seeker Tue 25-Sep-07 13:06:55

Milly - my thoughts are with you. Be gentle with yourself - you did the best for your little boy.

TheMaskedPoster Tue 25-Sep-07 13:07:13

I am in tears reading that - I am SO very sorry for you and your family and what you have had to go through.


wishing you strength and courage for the future and all the support you need.

RibenaBerry Tue 25-Sep-07 13:07:17

So very sorry for your loss.

bossykate Tue 25-Sep-07 13:08:03

i am so very, very sorry for the loss of your baby sad

cocolepew Tue 25-Sep-07 13:08:31

This is heartbreaking. Please don't think you 'signed his death warrant.' sad. I don't know what to say except how sorry I am.

fireflyfairy2 Tue 25-Sep-07 13:08:48

Oh sweetheart ((hugs))

Do you want to tell us his little name? Did he look like your or dh?

Are you going to do something in his memory? I know it may be too early, but a tree at a special place where you can go & talk with him would be nice.

Also, did the hospital give you any sort of support groups to contact?

Anna8888 Tue 25-Sep-07 13:08:59

I'm so very sorry Milly sad

Summerdressesandlacyboots Tue 25-Sep-07 13:10:41

Oh Millie, you've made me have goosepimples with how you feel. How brave of you to write down so eloquently what happened and how you feel. He was a very loved little boy xxxx

Susianna Tue 25-Sep-07 13:11:10

Oh Milly, how painful, I'm crying reading this, I hope you know we are all here for you xx

God bless him, little love.

Clary Tue 25-Sep-07 13:12:25

Oh milly, tears in my eyes as I read yr post.
So glad you could look at him and tell him how you loved him.

I am so lucky never to have gone through anything like this, but I have friends who have. Were you advised about having a funeral etc. A friend of mine found that a help, tho also very hard.

Hope you find support and sympathy on this board, we are here for you. sad

bookthief Tue 25-Sep-07 13:13:51

I am so, so sorry for your loss.

welshmum Tue 25-Sep-07 13:14:05

So sorry Milly, so very, very sorry. Did the hospital suggest any counselling for you? Is there a community midwife you could call and see if there's someone professional you could speak too. We found this helpful when some thing happened to us. Thinking of you

BandofMothers Tue 25-Sep-07 13:17:21

Try not to look at it as a waste. Even tho it ended in tragedy you had that tiny time with him and you can treasure that always.
He will always be your little boy and you can give him a name and keep him in your heart forever. I'm glad you had that time and could look at him and talk to him. It will help you to grieve for him, and you need to do that as you would with anyone else. Let yourself grieve, he was a real person esp to you. Don't feel like you shouldn't feel that way because you should, it is perfectly normal for you to feel that way and what you describe sounds like a normal reaction to losing a loved one.
Only time will heal the grief, so make sure you rest and cry and heal yourself too.

Hoping the pain eases soon MillyH(((((((()))))))))

mynameis Tue 25-Sep-07 13:17:21

Thinking of you Milly xx

PondusLector Tue 25-Sep-07 13:17:39

I am so so sorry
A very similar thing happened to me, except that it was trisomy 13. I was also diagnosed at the 20 week scan.

SANDS helped me an enormous amount, like you I found it impossible to talk to friends or family.

Now, I have come to a place where I know that my baby son is still with me, as yours is with you.

Bless you all, be kind to yourself. It is such early days XXXXX

littleboo Tue 25-Sep-07 13:19:50

how very sad for you. agree with others SANDS can be very helpful

Tutter Tue 25-Sep-07 13:22:37

milly - how utterly heartbreaking. i'm so sorry for your loss xx

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