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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:
Greensleeves · 27/09/2007 22:51

Kerrymum, I'm speechless. You poor, poor woman. How unbelievably painful it must have been.

I would hug you if I could.

NormaStanleyFletcher · 27/09/2007 22:53

Oh kerry

KerryMum · 27/09/2007 23:06

This reply has been deleted

Message withdrawn at poster's request.

Tickle · 27/09/2007 23:15

What a beautiful post you made about your son, Milly.

All he ever felt in his short life was love, and I hope the warmth of that love helps you and your family to get through this time.

Crying buckets here too!

Hugs to you and your family xxx

Greensleeves · 28/09/2007 01:21

Kerrymum, I just don't know the answer to that - I think it would have been unspeakably painful and difficult whatever you'd done, just different.

I think if I had gone through what you have, I would be very angry. I had a horrific pregnancy and a very violent birth experience with ds1, I am still haunted by it in some ways - but when I think about it I always seem to end by saying to myself "at least I took my baby home at the end of it all". I remember losing control and feeling like a wounded animal, because they had taken my baby away to SCBU after a horrific labour/birth and I was still in pain and needing an operation - I wanted my baby, my body knew labour had ended and I needed to hold him and feed him. I can't imagine how bereft I would have felt if I had had to go home with nothing, after all that pain and shock.

For the bereaved mothers on this thread - I am so sorry. I wish there was something helpful I could say.

poptot · 28/09/2007 03:27

Milly like others sat here in tears so sorry for the loss of your baby boy xx

WaynettaVonSlob · 28/09/2007 07:25

Milly - thinking of you, your DH and our little angel....

ladylush · 28/09/2007 08:53

kerrymum - I am so shocked and sad to hear what you went through - and angry that you were treated like that.

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