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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:
Twinkie1 · 25/09/2007 14:13

Oh Milly honey my heart is breaking for you.

I went through this with my sister 4 years ago - it was horendous - I was there when she found out that the pregnancy wasn't feasible and there when the injection was administered - I held her head away so she wouldn't see it but watched myself - something in the years that have passed I wished I hadn't have. He had the cortex I think it is missing - the part in his brain that passes messages between the two halves anyway and wouldn't have survived more than a few hours until the fitting that he would have experienced ended his life.

As a life long pro life person I was very mixed up but realised that it was the right thing to do - I couldn't have imagined her having to carry Miles to full term knowing his life wasn't going to be a full and happy one, knowing that she would have only have had hm for a very short time. She did the right thing. It was bad enough having to watch her for a few days until thetablets that they gave her took effect and she went into labour, but we all rallyied round during that time and really came out of it having laughed and spoken alot about things that had been kept buried in our family for a long time.

Prof Nicolaides was there for that too - he was wonderful - I knew him already after having to have a CVS with my daughter when it was relatively new and then again a year after my sister lost Miles with my son. Both thank God were fine.

She had lots of counselling and I bought her a little wooden box to keep all the memories of her son in - pictures and his wrist band etc. I think that really helped having a little private place to go to to remember him. She said SANDS were great as were a few books that I bought her - I will have a look and find the titles for you later this afternoon if you think that will help but I have to go into a meeting now.

Things nearly ended with her and her husband too - the genetic fault was his - long history in his family and he tried to push her away - she was hurting so much that she couldn't see he felt guilty and just wanted to give her the chance of having a baby without the genetic counselling and testing that they would have had to go through. They are ok now though and she is having IVF to conceive. It is hard when the pain is so raw but she lost sight of the fact that he had also lost his son.

I hope I haven't upset you - I thought maybe telling you what had happened with her may help in some way, sorry if it hasn't. I am sure the thread is on Mmsnet somewhere - it will just be a very long time ago.

My thoughts and prayers are with you.

Twinkie

MillyH · 25/09/2007 14:18

Thanks Twinkie. It does help to know what happened to other people. I have to go in a minute, but if you could look out those book titles I'll be back on line later.

OP posts:
justjules · 25/09/2007 14:18

This reply has been deleted

Message withdrawn at poster's request.

MillyH · 25/09/2007 14:20

Pondus - thanks. I think online might suit me until I feel a bit calmer. I suppose I must be a mad wreck of hormones at the moment.

OP posts:
frogs · 25/09/2007 14:27

Milly, I had a little nephew with trisomy 18, who died at 6 weeks old. He was much loved, though for such a short time, and is not forgotten, just as your little boy will not be forgotten.

It is an appalling situation, whatever decisions you make -- there just are no good answers for this one.

The only thing to hold onto is that it will one day get easier. I know it seems impossible now, but you will not always feel as bad as you do now.

XX

Miaou · 25/09/2007 14:36

How desperately sad Milly. I'm so sorry for you and your dh.

DontlookatmeIamborrrring · 25/09/2007 14:38

My beautiful friend sadly gave birth to her baby at 22 weeks, she had Trisomy 13 she has done many things to remember Grace and she will never forget her. She has just been through the most tentative pregnancy (various problems showing up on scans) and produced a gorgeous healthy baby boy! I have just spoken to her and she also suggested ARC and an MSN group. Take care Milly.

CantSleepWontSleep · 25/09/2007 14:50

Oh gosh - am crying buckets at your post Milly. I am so, so sorry for your loss.

francagoestohollywood · 25/09/2007 14:53

I'm so sorry Milly .

hermionegrangerat34 · 25/09/2007 14:59

Nothing to say really but can't read your post and not say anything. Love and prayers to you all as you mourn your loss. Try to hold onto the thought that it WILL get easier, however much it feels now like it won't.

lucyellensmum · 25/09/2007 15:12

Your post milly is so heart felt and loving. You did the right thing for your little boy, no question there. Of course this must be so painful for you, i cannot imagine. I don't have any words to take this away for you, but i had to post to let you know i am thinking of you. We are all here to listen if you feel that writing things down will help, that way you will know that there are people who understand and care.

Love to you and your family xxx

weeonion · 25/09/2007 15:15

millyh. what an awful sad thing to have happened to you, yur family and your wee boy. thinking of you. xoxox

boomie · 25/09/2007 15:19

I am so so sorry to hear what you have been through - thinking of you and your family.

Pixiefish · 25/09/2007 15:25

So Sorry Millie. I had an amnio to check for Edward's Syndrome as the blood test came back high risk and have to say that I went to hell and back in those 2 weeks, waiting for the amnio and then wating for the results.

majormoo · 25/09/2007 17:47

Very sorry Millie. I had a termination as my baby had Trisomy 13 although this was at 12 weeks. I also found this out at Kings and had Nicolades do my CVS and tell me 'you will have more children,but not this child'. They offer a free counselling (well psychotherapy) service to anyone who has 'lost a pregnancy in unfortunate circumstances' and I found this painful but very helpful. If you choose to, this option will be open to you too. It really does take time to come to terms with it, as everyone says. It is such an isolating experience. I found that people were almost frightened to talk to me. I would recommend ARC-I found the email group very helpful

suedonim · 25/09/2007 18:05

I'm so sorry, Milly.

Christie · 25/09/2007 20:55

This reply has been deleted

Message withdrawn at poster's request.

beansprout · 25/09/2007 20:57

I'm so, so sorry for your loss Milly xxx

worzella · 25/09/2007 21:15

Tears in my eyes as I read this - talk all you need - online or in RL

Different people will react to you in different ways. Most will be glad to listen, others will just not know what to say, for fear of saying the wrong thing. Perhaps get DH to explain to friends that you need to talk and saying anything (within reason) is better than saying nothing.

We had 3 early MCs and I was a wreck and the sadness I thought would never go away - but time is a healer - however cliched that sounds - but you need to give yourself time and be honest about your feelings to those around you.

Thinking of you...

Tamum · 25/09/2007 21:17

Milly, Blu said it all- we all feel as though we have met him you write so eloquently about him. I am so, so sorry

mytwopenceworth · 25/09/2007 21:19

I am so, so very sorry for your loss.

nell12 · 25/09/2007 21:21

My thoughts are with you, your family and your ds
xx

geordiemacminx · 25/09/2007 21:22

Thoughts and prayers for you at this very sad time.

Bluestocking · 25/09/2007 21:23

Oh Milly, how desperately sad. I'm so sorry.

gingerninja · 25/09/2007 21:26

so sorry

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