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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:
Piffle · 25/09/2007 21:26

Oh Milly
Your post has brought tears to my eyes, I cannot imagine what you have gone through and how you must be feel.
I hope you find some confort and support within your family as it is now and that you heal enough to be happy again one day.

FunkyGlassSlipper · 25/09/2007 21:28

My heart goes out to you.

I've never cried at a post on MN before.

You are in my thoughts tonight and will be for some time.

kentgirl73 · 25/09/2007 21:28

I read Twinkie1 thread and shuddered, exactly the same happened with my sister had a termination at 34.5 wks at Queen Charlottes Hospital, my nephew would have lived a complete vegitive state, when he was born, we found out that he wouldnt have made the birth, so by my sister and her husband making the most hardest, bravest and honest decision, they infact ensured little beanie went through no pain - 4 years on, they still have their days, they no in the hearts that it was the kindest decsion for everyone...i truely respect my sisters decesion and think she is the mosst amazing person for what she stands for.....and so you will feel like that in time too....

They have had genetic testing and both are ok to try again....this was 4.5 years ago and after alot of heartache and pushing each other away and finally to be happy together again, they are looking forward to a positive future with my niece who is 7, my sister has retrained and will be a nurse next year and they both do want to experience being pregnant again...

When my son was born after she lost her beanie, she was the most amazing and unselfish person ever, she really is the best auntie and sis

She has had so much comfort from Arc...
xxx

CountTo10 · 25/09/2007 21:29

I can't think of much else to say other than I am so sorry that you and your family have had to go through this x

lissielou · 25/09/2007 21:31

my thoughts are with you, i wish i could say something to ease the pain but your little boy will always be loved and remembered and i hope that you find some peace. please take care of yourself, it's early days and still very confusing but in time it will be easier to think of him. there are some wonderful women on mumsnet who can help you but agree that SANDS can be invaluable. thinking of you and your family x

LilRedWG · 25/09/2007 21:34

I am so sorry that you have lost your son. My heart goes out to you and your family. xx

lucywill · 25/09/2007 21:41

Milly, I am so sorry. You sound an absolutely lovely mum and I am thinking of you. xx

Dinosaur · 25/09/2007 21:43

I too am so so sorry for your loss, Milly. Thinking of you, x.

doyouwantfrieswiththat · 25/09/2007 21:45

so sorry

xXxamyxXx · 25/09/2007 21:49

am very very sorry for you and your dh. thinking of your poor little angel

Oenophile · 25/09/2007 21:52

"If his mum couldn't look at him then who else could? "

Milly, that's the poignant and the most loving thing I've ever read. What a lovely mother your little boy had.

Hugging you with all my strength.

elesbells · 25/09/2007 21:55

im so sorry for your loss

i really don't know what to say, its too sad for words. sending you lots of love and strength. take care of yourselves x

jellybeans · 25/09/2007 22:00

oh hun I am so sorry for the loss of your precious son. I went through simelar 6 years ago. My DD had a simelar chromosome problem. It is so very hard but time does heal the raw pain somewhat. Thinking of you xxxx

controlfreaky2 · 25/09/2007 22:00

am off to post on the channel 4 site...... to ask them why they think it's responsible to air that shite.....

controlfreaky2 · 25/09/2007 22:01

i'm so sorry. obviously that wasn't meant for this thread. complete mistake. sorry.

Marina · 25/09/2007 22:09

MillyH, I'm so sorry that your son died. I lost a son at 22 weeks too, he died in the womb. Trisomy 18 was your darling boy's death warrant, not your brave decision.
We remember the short time we sat with Tom after his delivery too, and cuddled him in his special tiny moses basket. It's five years now and we still love and miss him. I found SANDS a great help, and I did see a bereavement counsellor for many weeks to help me try to make sense of his seemingly wasted life and the cruel end to it.
Your posts about your son are full of love, I am firmly convinced that on some level Tom knew he was loved and I am sure your son did too.
Not being able to speak or do anything other than weep is completely normal and one of the aspects of grief that you just cannot avoid. You just have to endure it. I can promise you that it does get easier with time, that the deep misery recedes. My heart goes out to you though, the early weeks are so hard.
You mentioned that you prayed for a day before reaching your decision. I'm not sure if that means you have a faith or not, but I found these words by Julian of Norwich were just about the only Christian writings I could stomach in the weeks after Tom's death:

He said not 'Thou shalt not be tempested, thou shalt not be travailed, thou shalt not be dis-eased'; but he said, 'Thou shalt not be overcome.'

Posting on here really helped me too. Some my closest friends on Mn are people who helped me through that time and I see some of their names on this thread. Sending you much love and sympathy XXX

Jackstini · 25/09/2007 22:25

Oh Milly, I wish there was something I could do or say to take this pain away but I know there is not.
You made a brave, loving decision for your little son & even though you know in your heart there was no other choice, I am so sorry you are going through this.
Keep posting in the days and weeks to come - whenever you need support you will find it here.
Much strength and love to you and your family

Pinkchampagne · 25/09/2007 22:28

So so sorry for the loss of your baby boy, milly.

wrinklytum · 25/09/2007 22:31

So sorry for the loss of your little boy.xxxx

MrsWeasley · 25/09/2007 22:39

Thinking of you and your family XX

unicorn · 25/09/2007 22:40

Millyh
There is really not much I can add, there are many wise words here from many wise women.

I am so very, very sorry for your loss, and hope that you will find some comfort here with your virtual friends.

hobie1 · 25/09/2007 22:44

Huge sympathy for you MillyH. Having had to make the same decision as you 18 months ago, I can't say anything that will make the immediate future any easier. However, with the benefit of time I can say with certainty that things will get better.

Please make sure you talk to someone professional about your experience. However close you are to your family and friends, they will always have some hang-ups and insecurities which mean you can't truely work through what has happened to you. (I used to be a bit cynical about therapy, etc but having benefitted from it hugely that's no longer the case).

Give yourself plenty of time, be certain that you are in no way to blame, and be sure that one day you wil reconcile yourself to what's happened.

Good luck and massive hugs.

brimfull · 25/09/2007 22:46

so sorry

Greensleeves · 25/09/2007 22:55

I never cry at things I read on MN, but this is an exception. I'm so so sorry you're going through this.

BBBee · 25/09/2007 22:55

milly

I lost my son at 20 weeks.

I remember the pain being so hard and real I thought it would never go, but as time goes on the pain turns into love and you find your way to be.

In my thoughts.

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