How do you cope following a termination for abnormalities?

(78 Posts)
majormoo Tue 23-Aug-05 13:29:42

Last week I went for my 12 week scan, and we were told the baby, which we later learned was a girl, had severe abnormalities (trisomy 13) and was incompatible with life. I had a termination on friday.

Life has obviously been horrendous since then.The first couple of days were shocking, terrifying and we just kept collapsing into tears. The weekend was very sad and exhausting. The last couple of days have been a bit easier, but it so hard to accept what has happened. I wondered if anyone had any advice on how to accept something like this? Our friends are disappeared off the face of the earth, other than my oldest friend, no one has called me since we told them. We do have great family support though and a lovely 2 year old daughter.

We have been told it is just very bad luck and is very unlikely to recur, but I will be terrified if I ever decide to try again. Physically the hospital said, just wait for 1 period and then, if we want, we can try again. God knows if this will be too soon.

A counsellor from Kings College Hospital will call us in a couple of weeks, as in Brighton, where we live, there is a 2 month waiting list for counselling.

moondog Tue 23-Aug-05 13:34:26

majormoo,no experience of this but I am so so sorry. I can't imagine how utterly traumatised you must feel. Re your friends..maybe they just don't know what to say? How would you want them to be with you?
I know that there are people on MN who have been through this.
You will find alot of comfort and good advice I know.

Poor you.

WigWamBam Tue 23-Aug-05 13:35:21

Oh, how awful for you. I can't find the words to say how sorry I feel that you have had to suffer this.

I have no words of wisdom really, as I haven't been in your position, but I did have a miscarriage many years ago, and it does feel better in time. You will never forget, but it won't always feel as awful as it does now.

People find it very hard to know what to say in this kind of situation, and sometimes they feel that it's best to say nothing. I do hope that your oldest friend is able to provide a shoulder to cry on for you to take some of the pressure off your family.

Two months for counselling sounds like a long time, but it will be here in a flash. Do get onto the waiting list - you can always cancel the appointment later if you don't think it would help you.

jabberwocky Tue 23-Aug-05 13:37:42

I am so, so sorry MM. I can remember waiting for the results of ds's amnio, wondering how I would find the strength if it was bad news. I just can't imagine your grief. Please keep posting, I'm sure it will help talking about it here.

alison222 Tue 23-Aug-05 13:38:35

Poor you I have no constructive advice to give but send you cyber hugs, and hope someone will be around soon who can give you some good advice.
I think how you are feeling is a natural grieving process. As you do already have a child it sounds like the advice is probably sound, its just bad luck, and unlikely to recurr.
I suppose in a way if the condition is incompatible with life then you wuld have lost the baby at some stage anyway. I think it may have been much harder had it been at a later date.
I'm not in any way trying to minimise th pain you must be going through and just very clumsily trying to find words to say that may give you some little comfort and to let you know my thoughts are with you

Rowlers Tue 23-Aug-05 13:46:48

No personal experience Majormoo but a friend recently went through similar. They had been trying for a baby for a long time, were over the moon and abnormalities were only spotted at the 21 week scan.
She had to deliver her dead baby at 23 weeks and has found it very very hard to get over.
Similar happened tom another friend who came through it all remarkably cheerfully. Her view is simple - it wasn't meant to be. But she's a tough cookie and is very pragmatic.
It's all so personal isn't it? How you get through I mean. Good luck, I hope you find your way through!

itdoesgetbetter Tue 23-Aug-05 13:54:02

((((((hugs)))))))

well I have not had experiecne of a termination following abnormalities, but have had experience of a termination. they are horrible, there's no denying that and my heart really does go out to you. (((((((hugs)))))))

hopefully the time will pass quickly and you'll have your councilling, all I can advise is you will never forget your baby, I haven't after 8 years. please don't blame your self and keep the channels between u and DH open u need to talk about things betweeen u and grieve for your baby. I split up from my DP at the time 2 months later, only 6 months ago we started to talk about it, and honestly it was the worst thing we did by not talking at the time.

I suspect your friends won't know what to say for the best, or what to say to help you, tbh I don't think there is anything anyone can say, this is somehting u need to come to terms with together.

be good to urself, and don't expect much from urself over the next few months.

janinlondon Tue 23-Aug-05 14:26:44

Rign SATFA. They are fabulous people.

"Support After Termination for Abnormality (SATFA)SATFA provides information and support to families who are told that their unborn baby may have an abnormality. They also offer long-term support to parents who choose termination.

address: 73 Charlotte Street, London, W1 1LB.
telephone: 020 7439 6124
helpline: 020 7631 0285 "

Blu Tue 23-Aug-05 14:55:06

Majormoo, I'm so sorry.

DS has a bone missing in his leg, and I churned guilt and 'what ifs' around in my mind for so long. (was I too old, drank too much, used plastics in the microwave, a genetic misfit who shouldn't breed..) But one day the consultant said 'at the moment of conception there are so many millions of processes taking place that it isn't surprising that often, they don't all happen correctly'.

So, so sorry that your baby wasn't ever going to make it, it must have been a horrible horrible thing to be not pregnant after so many hopes and dreams.

I hope you can get some help - but please look after yourself.

XXXX

sweetheart Tue 23-Aug-05 15:26:35

majormoo,

I lost a baby to a heart defect in January so I sympathise with how your feeling right now. My best advice to you is to take time over your feelings and process them all fully rather than trying to brush them aside.

Take pleasure in giving your dd lots of cuddles and kisses - thank your lucky stars you have her as she will keep you going through the toughest times.

Don't worry about your friends - they won't know what to say to you. I found it was best to organise a big night out when I felt ready so I could tell them all what had happened in one go and then get on with the process of enjoying an evening out.

There is life afterwards....even though it doesn't feel that way now. Next time your pregnant you'll worry like mad but you'll get brilliant care and be very well looked after (says she who is now 25 weeks pregnant again)

Most of all, be good to yourself and dh and you can get through this!!!!!

sweetheart Tue 23-Aug-05 15:27:41

Oh, and if you need to talk to an outside please feel free to CAT me.

fisil Tue 23-Aug-05 15:36:05

Oh majormoo, what a terrible thing for you to go through. However you feel is exactly the right way to feel, and there is no time limit on your grief. And don't ever let yourself feel guilty because you have such a wonderful daughter, or for any other reason. Grief is so strange, any thoughts you have are allowable!

Mine was called a mc because it was at 9 weeks and was originally diagnosed (at 7 weeks) as a missed miscarriage). However, when I went back for the follow up scan 2 weeks later the poor little mite had continued to grow, but had no heart, no shape. It was just a blob. So I had a d&c for a miscarriage - that was how it was defined. But I still think about how it was growing. Maybe I'm the only person inthe world who will ever consider that it was human, but to me it was. We decided to leave it and not get pg again for a while, then we went on a holiday and started thinking "yeah, why not." And I got pregnant straight away, so it was only 4 months after the mc, and it was way too soon. I suffered from AND from virtually the very beginning. While things may well be different for you (you may be a much stronger person than me), don't feel any pressure, and don't even start to think about getting pg again until you are feeling much much better. Oh, and your GP or HV can be excellent for stopgap counselling when you're desperate - I used mine a lot.

edgetop Tue 23-Aug-05 15:50:48

hi this happened to me 12 years ago it was a very hard time . iwas 22 weeks.i was told my baby had lots of abnormalities they could,nt even tell what sex it was it,s heart facing wrong way all organs on outside of body,downs spinabifida.i was told the baby would not go full term and could not live on it,s own.for a while i just felt like it was happening to someone else.i was offered conselling but there was awaiting list .shortley after my marriage broke up .i through myself into work,went on holidays with the girls,i had good days and bad.it,s true time is a great healer,you don,t forget but the pain gets easier to live with.in 1998 i met my dh we decided to try for a baby it happened really quickley ,they looked after me really well at the hospital did all the tests i must say it was a worrying time but worth it when he arrived perfect in every way i hope my story helps,

majormoo Tue 23-Aug-05 17:42:32

Thank you for all your messages. It does really help and stops us feeling so alone. My DH read them too and was really touched.

I do feel really lucky to have my DD and also a DH that I can really talk to. We just keep talking through it again and again and again to try to come to terms with it.

I know I shouldn't worry about my friends when we have so much else to deal with, but it would be so nice if people would just call to see how I'm doing, rather than treating me like a social leper. I am still me despite the fact I've lost my little girl!

Blu Tue 23-Aug-05 17:50:13

Would you feel brave enough to call a couple of really close friends and say 'I need you, I can't get through this without you, can we meet'?
That might help them understand that you DO want them - they are maybe thinking they don't want to intrude.

hello to your DH - you can post here too, you know!

Thinking of you Majormoo.

HandbagAddiction Tue 23-Aug-05 18:00:37

Majormoo - whilst this has never happened to me, I do have a friend who last year lost her 10 week old son because of a major heart defect. I know it's not entirely the same, but what struck a chord with your postings is when you said

" I know I shouldn't worry about my friends when we have so much else to deal with, but it would be so nice if people would just call to see how I'm doing, rather than treating me like a social leper. I am still me despite the fact I've lost my little girl!"

I've had several conversations with my friend since her little boy died along similar lines to what you have talked about. She cannot understand wny so many of her previously close friends seem to be completely unable to talk to her about everyday stuff, let alone provide her with any consolation about what has happened. And, the crazy thing is - she's actually desparate to talk to people about him.

May sound harst but I don't think we Brits do the 'death' thing very well. I genuinely believe that most people are often embarrassed in some way that they don't know how to behave or what to say - often worried that their actions and words will be inappropriate, ill-timed or even completely insenstive. Often they mistakenly feel that by talking to you about it, they will 'rake things up' for you instead of allowing you to move on. Again, ridiculous because part of you learning to deal with what has happened is through talking to people about how it is making you feel on a day to day basis.

I know it probably seems difficult right now, but I honestly think that you need to reach out to your friends and give them some guidance/steer on what you need them to do. Tell them that you need to talk about it, how you're feeling day to day, what you've been through, etc. Crazy really to think that the person actually needing the support is often the one who has to tell everyone else what form that support should take....but I think this is maybe the only way to make a breakthrough here. Otherwise, the longer you leave it, the harder it will be for both you and your friends to discuss.

Really sorry to hear about what has happened though. .

RosiePosie Tue 23-Aug-05 18:49:20

Majormoo, some good friends of ours had a baby boy end of 2003. The scans did not detect any problems and he was born at nearly full term. It was only once he was born did they realise something was very wrong. He had a serious bowel disorder, spent 6 weeks in SCBU before passing away. It was heartbreaking. It is very difficult as friends to know how to behave in a situation like this, I don't know if I behaved in the right way. We gave them space in the early weeks as I know they were busy at the hospital and they had good family support. I just tried to act as normally as possible with them, but I must admit I found it very difficult as I had just had a baby myself. It has taken them a very long time to even begin to heal, they had counselling for over a year. I think the experience has bonded them more as a couple and happily they have recently given birth to a healthy baby boy. It is still such early days for you, be gentle on yourself, prepare to be in it for the long haul, but gradually things will become easier for you. Take care xx

edgetop Tue 23-Aug-05 19:16:54

i know what you mean about friends keeping out of your way, have you rang them for a chat,they might think you need time with your dh & dd.everybody is differant,i know when it happened to me i just wanted to talk about it,they are maybe waiting for you.

Eeek Tue 23-Aug-05 19:29:47

I had a termination because of an abnormality which would have killed my ds. It was the single hardest thing in my life. I find friends and family astonishingly insensitive to it now, although they were fabulous before hand. In my case everyone knew as I had it very late because of other reasons. I think it's difficult because termination is largely taboo, sick babies are hard to talk about and people can't cope with the combination of the two. You need to grieve and unfortunately it is very hard to get recognition for that because people didn't see you lose your baby. They do care, they just don't know how to show it. The main thing is that you and your DH hang together, grieve in your own ways, maybe mark the occasion with a church or other service and you will get through it.

Tumblemum Tue 23-Aug-05 19:32:12

marjormoo I don't have direct experience of your situation but I had a miscarriage earlier in the year and what helped us was talking about it together as much as possible, keeping what memories we had e.g. scan pictures, due dates etc... we are both christian but not actively practising I wish in hindsight we had seen a local vicar as apparently they can arrange some sort of service for a child lost through miscarriage whatever the child's age, still feel bad that I have not done this maybe we still will. My friends were not that helpful, a lot of our close friends do not have children so either was hard for them to understand or too painful re not having their own children.
Anyway so sorry that you are going through this, people said to me that it would get better and it did after the passing of time. What really really helped was talking to other mums who had been through the same as me, as they understood how I felt.
I am now just pregnant again but it is fairly loaded. Take great care of yourself.

Eeek Tue 23-Aug-05 19:37:28

Tumblemum - it's very common for people not to have a service at the time but to do so later. Your vicar is bound to understand and can create a service for you and anyone you want to attend. As I say my termination was much later so we had a full burial and I found it incredibly helpful. A service of some kind is a formal recognition of loss.

Tallbird Wed 24-Aug-05 08:05:04

Majormoo, I went through exactly the same as you in October of last year, so I do know the awful time you are going through.
The thing that got me through it was the knowledge that I would rather have discovered things early on than have had to go through the trauma of a stillbirth closer to term, or delivering a baby who didn't survive for long. I also found huge consolation in the fact that I also have a lovely dd - I think that going through something like this really makes you realise what an immense priviledge it is to have a child. I have to admit that I didn't tell even close friends immediately - after all, it's a bit of a difficult conversation to start...but when I did, I was lucky that they were all really supportive.
Can't really offer any specific advice as to how to get over things, as I think that everyone deals with grief very differently. For me, we decided to try for another baby immediately (and got lucky first time) - am currently 38 weeks' pregnant. This pregnancy has been pretty terrifying - especially in the early stages. I didn't find the NHS around here particularly helpful - would highly recommend going private for the 12 week scan / other testing if you can - I found the Fetal Medical Centre (which is actually run by the same team as at Kings) absolutely fantastic.
Thinking of you.

Bellajade Wed 24-Aug-05 09:02:08

I had a similair experience 4years ago when I was 19miscarried due to abnormalities and had a d&c op so I wouldnt have the extra heart ache of seeing my baby.I cant really tell you how to deal with it as 4yrs on I still get upset on the anniversary, even though I now have two healthy kids.I would just say dont bottle up your emotions talk to friends and family or counsellors.The thing I found hard was people pretending like nothing happened and talking about mundane things,sometimes you just need someone to acknowledge your loss.It is hard I know but just know that my lil angel was there to greet yours

majormoo Wed 24-Aug-05 13:11:31

thanks everyone for your advice and support.

Have had a bit of a teary morning -notes arrived from the hospital about disposing of the baby's remains and my dad called and said 'well I don't see why you found out the baby's sex. Still, if it had such dreadful abnormalities it would have died anyway.'

I feel much better now after reading all the posts.

Blu Wed 24-Aug-05 13:16:16

Just saying hello, Majormoo.
How do you and DH feel about the letter form the hospital? What do you think you want to do?

milward Wed 24-Aug-05 13:21:50

Thinking of you majormoo during this difficult time xxx

majormoo Wed 24-Aug-05 13:30:12

well it was only confirming something I had signed when I went in to hospital, but it just hit me when I saw it in writing again.

We have agreed for the hospital to dispose of the baby's remains for us. We did have the choice to have a funeral or something ourselves if we chose, but have decided against it. We went down to the sea over the weekend and threw a rose into the water and had a good cry, so in a way we have had our little ceremony already.

I am also going to go down to church and light a candle for the baby. Our local priest is lovely though not sure what a catholic priest would say about a termination.

We are going to Venice for a couple of nights next week for our wedding anniversary (which I hope will still be OK) and we'll go into a church there as well to light a candle and think of our baby.

The bereavement office will call us in a few weeks before they do anything, as it says on the letter that some people do change their minds when they have had some time to think about everything.

edgetop Thu 25-Aug-05 14:23:38

hi majormoo how are you and dh feeling today? thinking of you both

majormoo Thu 25-Aug-05 22:51:11

Thanks for asking. Emotionally we have been doing OK today. Contacted ARC (the charity someone else mentioned who have changed their name from SATFA) and they have been a great support. Also a friend from my antenatal classes (with DD) suggested meeting tomorrow and a friend called from Oz, so feel like people are there for us after all.

Unfortunately did have lots of sudden bleeding so had to go back to hospital. It has calmed down now and they said it is an infection, which will clear up with antibiotics. BIL was babysitting this evening so we could have a night out together-didn't plan to have it at the Royal Sussex Hospital but at least it was a cheap night out!!!

aloha Thu 25-Aug-05 23:20:45

Majormoo - that's so sad. I have no experience but feel for you. So sorry your unborn daughter was so ill. You have been very brave.
I hope the pain will fade with time.
Blu, anyone would be proud to have your ds as their own.

Littlestarsweeper Thu 25-Aug-05 23:27:16

majormoo. I havent been through such a horrific experience but am tearful. I can only comment on the friends disappearing, as with any loss or great illness most folk simply dont have the words to say how they feel.

They are not sure if you want to talk about it or be as if nothing has happened. I can guarantee they are all deeply worried about how to approach you and your predicament.
Would be easier if you could approach a closer friend and tell them how you feel and what you would of wouldnt like to discuss, this may get the ball rolling. Much love xxx

milward Thu 25-Aug-05 23:27:18

Be kind to yourself majormoo xxx

WestCountryLass Fri 26-Aug-05 22:25:45

Somebody posted SATFAs details earlier in thi thread, they are now called ARC (Antenatal Results and Choices) and they do offer a befriending service from parents who have been there:

http://www.arc-uk.org/

(((gentle hugs)))

babylily Mon 05-Sep-05 20:33:25

I'm a couple of weeks further down the line than you, majormoo.
I was induced and delivered my little boy on august 11th at 14 wks.

I nearly made a whole day without crying yesterday and I can honestly say that sometimes I feel almost 'me' again.
We are going to the hospital organised funeral at the end of this month, and we have given him a name, planted a tree and put a memory box together. (we are basically trying everything that is recommended to help).
I've kept telling myself that the worst is behind me now. Getting pregnant again is all I want to do now, but with the knowledge that I will have to have CVS and its m/c risks at 11 weeks it won't be a particularly happy time.
My mantra at the moment is that this will make me stronger. Our 2 yr old daughter has kept us going too.
here's hoping that we have happier times in the future.

majormoo Mon 05-Sep-05 22:33:31

I've had quite a 'good' day today. First day back at my DD's music group and meeting up with lots of mums and babies. I was really nervous but actually it was OK. I have basically ended up telling everyone what happened which I think made it easier.

I know what you mean about dreading CVS and miscarriage if I am lucky enough to get pregnant again. I was a terrible worrier before this happened to us; I will be unbearable from now on.

Anyway as you say BabyLily, here's to happier times ahead.

Blu Mon 05-Sep-05 22:43:20

M'moo - I had been wondering how you were. I'm glad you were able to tell your group, and that it felt ok to do so.

About the future - what I meant to say at the end of my first post, but didn't quite complete the sentence, was try not to feel that it was anything about 'you' that might be repeated, you weren't responsible in any way - the most horrible accidents of nature are generally random, unless there is anything the hospital have told you that suggests otherwise.

Has the counsellor from King's called you?

hester Mon 05-Sep-05 22:51:42

Hi Majormoo, just to say how terribly sorry I am that you are going through this. I haven't had to go through the same thing myself, though I have friends who had, and I have been offered termination for my current pregnancy (minor abnormality).

Your bereavement is terrible and I'm sad that your friends are backing off - though not surprised, because that is what people do when they don't know how to help. I really feel for you, and hope you find some comfort soon.

xxx

majormoo Thu 08-Sep-05 17:53:46

thanks for asking how we're doing.

We've had the results of the CVS and been told it was totally random but despite this it is hard not to worry it will happen again.

The various mums I met through having my DD have been fantastic actually. Some of them have been through bereavement themselves so I think they understand a bit more what we're going though. Have talked to my oldest/closest friends about their inability to pick up the phone, and apparently they were calling each other discussing whether they should speak to me or not! I'm glad I've talked about it with them now but although I have explained I need to talk about it, they just keep changing the subject when I try to bring it up. Oh well-I am not so bothered by that now that I have found other people I can talk to.

No the counsellor from King's did not call and I haven't got the energy to chase it up. I went to see a private counsellor this morning, who seems really nice, so think I will stick with that for now. I do feel a bit let down that there is absolutely no follow up on the NHS either physically or emotionally, but I suppose resources are tight. We were in such shock when it happened, it would be good to have a follow up just to run through everything.

Blu Thu 08-Sep-05 18:00:43

yes, it must be very hard to feel 'abandoned' like that.

What are the things that you want to spill out? that you want your friends to hear?

Maybe there will be the 'right moment' when you DO feel you want to chase King's - maybe not. But I'm glad the private counsellor seems as if you may be able to get a little help - were you and DH able to go together?

Still thinking of you.

dottee Thu 08-Sep-05 18:00:47

Majormoo - have not read the thread through but just to say you will probably never get over it.

I terminated my much wanted little boy in 1990 because he had anencephaly. I've had two children since but I'll never the forget the experience and the sadness.

My best wishes to you and your family. CAT me if you wish.

majormoo Thu 08-Sep-05 18:15:04

I think I just need to talk about it a lot as my way of coming to terms with it- whether that is worrying about the future or feeling sad about the baby we've lost. It is just hard when, for example, I tried to bring it up with one friend who said ' well I hope you are feeling better about all that now' and walked off!!! It's ok really though as I've realised I can't expect everyone to just react how I want them to. We all have different ways of dealing with things. At the moment I have plenty of support, from plenty of people so it is fine.

DH can get free counselling through work, so I think he will use that if he feels the need (though he isn't so sure at the moment.) We will be skint if we both pay for private counselling!! Have a week's holiday in France next week, so hopefully we will have a good break.

bundle Thu 08-Sep-05 18:23:53

majormoo, I missed this because I was away. I have a friend who had Patau's syndrome baby terminated around halfway through her pregnancy and has found it very difficult to come to terms with. I think she wishes she'd had some counselling when it happened, rather than now (years later) so do persist in chasing up anyone who can offer you help. I hope your holiday is the lovely break you deserve, x

inglis Tue 20-Sep-05 15:05:04

Just seen this thread. Just over three years ago I terminated a pregnancy due to multiple structural abnormalities at 12 weeks. We were told the babe had Edwards Syndrome. Previously i had suffered a miscarriage. Like you I had one child. It was horrible - but I think that a part of me was grateful that it had been picked up at an early stage. I had friends who - I felt - had suffered worse - one had given birth to a stillborn child, another had lost her baby at around six months into her pregnancy.

I feared for my next pregnancy - and, of course, could only really relax once we had passed the 12 week mark. That pregnancy was fine.

However my last pregnancy was beset with problems again - an increased nuchal fold and an increased risk of Edwards. The only difference this time was there were no abnormalities to be seen - the babe looked perfect. And he is perfect - three months old and very bonny, despite having a horrible cold at present.

In my experience pregnancy hasn't always been that easy. But I have my beautiful family now - as you will. Keep in touch and big hugXXX

sansouci Tue 20-Sep-05 15:10:05

majormoo, just read your post but not entire thread. i totally support your decision but can all too easily understand how devastated you must be. i had an amnio with each pg, being over 35, and i often wondered what i would "do" if i had had to terminate. so sorry for your loss.

majormoo Tue 20-Sep-05 22:46:16

well got through first day back at work. Not too bad, though I know my boss was annoyed I took a week and a half off as sick leave after the termination. Luckily had already booked nearly three weeks off before this happened so did get a month's break. She's also asked me to cancel a hospital appointment as it falls next Thursday when I should be at work (I only work Tues-Thurs.)I think this is a bit unfair so am determined to still go.

Am going to see Therapist at Kings anyway in October. Bit nervous about it, but hopefully it will help.

sansouci Wed 21-Sep-05 10:07:22

Does your boss know what happened? If not, you could tell her that you've "lost" a pregnancy. Which you have. And you need time to grieve. If she does know, she's a frightful insensitive cow -- shame on her!

WestCountryLass Wed 21-Sep-05 15:38:31

it is shocking to realise that their are some people in this world who are completely unsympathetic to baby loss. When I lost my first my boss was like that so you have my sympathies

Did you get in touch with ARC? Even if you haven't contacted them yet you can always get in touch with them and they will be a tower of strength, they offer a befriending service so you can speak with someone who has 'been there'.

majormoo Wed 21-Sep-05 18:24:44

Yes my boss does know the whole story. She doesn't mean to be insensitive- she can't help it! Plus I am trying to be my usual self at work so I suppose she thinks I am over it now. Other people at work have been really supportive, and they all know what she is like anyway.

I have contacted ARC who have been great. I haven't called their local contact yet. By odd coincidence my friend's sister, who lives nearby, went through exactly the same experience a few years ago, (scan at King's, termination at Brighton, Trisomy 13) so I spoke to her which helped. She's just had a healthy little girl. I've been feeling really negative today that I will never have another child, so when I think of how other people have managed to have kids after this it helps a little.

Also, while I was at work today and DH was working from home, a woman rang who I only vaguely know from the NCT (I used to help out with the local branch) who said she had heard what had happened. She wanted to call as it happened to her 6 years ago so she wanted to offer support. She spoke to DH for about 20 mins which he really appreciated. It is nice to know people you don't know are there for you (including mumsnet!)

bundle Wed 21-Sep-05 18:35:55

majormoo, i'm glad you're getting some more support. i had a high risk of edwards during my last pg and would definitely have opted for a termination if it had been so. sending you lots of positive vibes and best wishes, xx

amyxxx Thu 22-Sep-05 11:10:45

i don't have any personal experience here, but when i was pregnant with my son a friend of mine was also pregnant. we were the same gestation maybe a week difference. anyway everything was fine untill it came up to our 20 week scans. i had mine and everything was fine, my friend then had hers and they discovered that her baby was completly brain damaged. if she went through with the pregnancy the child would have no life. by the time she made her mind up to have a termination she was 27 weeks.
she then returned to work several weeks later, but as soon as she saw me she couldn't cope with everyone asking when my baby is due etc
i then went on my maternity leave but we didn't speak too much . i told her when i had given birth but it was hard for her as she should have had a little boy as well.
we then lost contact for a while, a year later i hear she has had another baby boy. she said that was the only way she could deal with it.
i think anyone who has to go through this is very brave.
good luck!!!!

inglis Thu 22-Sep-05 14:25:11

I remember feeling exactly the same, majormoo - that I might never have another child. Also I feared that I might be a genetic carrier for Edwards/something else. I think this fear was compounded by the fact I'd had the miscarriage as well. Like you I was just so grateful for my lovely little girl.

Really, really, really I feel so certain that you'll go on to have more children. What you've been through is just one of those horrible things that life throws at us ... God Bless. All the best xxx

grazia11 Fri 23-Sep-05 20:39:14

I was so sorry to read your story, majormoo. I was moved to join this thread because the very same thing happened to me last year at 12 weeks. I was 40 years old and it was my first (much longed for) pregnancy.

I was told then that there was no reason why I couldn't go on to have a healthy pregnancy. And, the thing I would say to you, majormoo, is that, however miserable I felt, and however awful i felt about the decision we felt we had to make at the time, I have never regretted the decision or thought I could have done anything different: the foetus (a little girl) was terribly ill and was not likely to survive much more of the pregnancy.

No other pregnancy happened for a while and then I had a laparoscopy in July to remove some ossified tissue in my uterus (they only knew it was that when they opened me up). And then, joy of joys!, I fell pregnant (we thought on our wedding anniversary in August).

However, I have just had an eight week scan (yesterday) which has revealed an anembryonic sac. I have to go back in a week to have a d&c as I show no sign of miscarrying the placenta etc. This time there is no foetus, though, which means that i don't have the same awful feelings of guilt as last time.

But I am feeling very angry at the moment - mostly at myself for being so old and generally "at risk" (how i wish i'd met the man i wanted to spend my life with in my 20s - i was 36 when we met). I had months of therapy following the termination last year, just to come to terms with the fact that I'm really not that special and frankly i am NOT being singled out for some malign fate: these things just happen (especially if you are an older mother - however fit and healthy you are in every other aspect, gynaecologically, you're ancient). I even told my therapist recently that, this time, I felt I would be ready if something bad were to happen again and not take it so, well, so damn' personally. Sounds ridiculous, doesn't it? Especially when i am so sad and angry now. Have been accused by my beloved of being negative and wallowing in this - is there anyone else out there who has experienced this reaction?

Am sorry if this counts as hijacking a conversation thread - I feel I ought to be offering words of comfort rather than more tales of woe but I feel so alone at the moment. I hope to buck up in a few days (maybe after the op) but right now am just feeling tired and miserable and fed up.

frogs Fri 23-Sep-05 20:48:48

Majormoo, a few years ago my sister had a baby with Edwards syndrome, who lived for a brief 6 weeks.

She has since gone on to have two completely healthy babies. I wish you all the best, and hope that things get better for you.

majormoo Sun 25-Sep-05 17:10:23

grazia11 I am really sorry to hear what has happened. Life can feel so unfair sometimes.

Just wanted to let you know I am thinking of you and of course feel free to use this thread as much as you want.

I think it has really helped me.

Jennyd1982 Sun 13-Aug-06 12:12:05

Im 24 and in March this year had to make the hardest decision of my life.

I attended what i thought would be my 12 week scan (later learned i was 15 weeks) to be told that my baby was suffering from Hydrops. I underwent numerous tests to help eliminate what the possible cause could be. At the time of my scan i was struck down by a virus which my consultant told me could be the cause of the Hydrops (the baby could have contracted the virus from me) although there were lots of other possible reasons for the fluid being there too ie Chromosome disorders... My blood tests shown that i had a 1 in 1536 chance of the baby suffering from any chromosome disorder so i had to stay positive and hope that my baby was only suffering as a result of my Virus and that the baby would get better (tests shown that the baby wasnt suffering from any serious virus). I was scanned each week and each week the hydrops appeared to be getting worse (fluid in the babies neck, chest wall and in the babies head)at 17 weeks my consultant detected another abnormality with the babies brain (it wasnt developing as it should) this is when i decided to have the Amnio. My fears were confirmed two days later... My baby was suffering from Downs Syndrome. I had to make a decision that i know will affect me for the rest of my life. I chose to have a termination. Not only beacuse the baby was suffering from Downs but because i knew if the baby had survived (which was very highly unlikely with the problems that the baby had) that she would have been suffering at the highest end of the scale.

I know in my heart that i made the right decision not for myself but for my baby girl. Its such a cruel world out there. She would have had no proper form of life.

Life seems so difficult for me right now because i feel that everywhere I turn there are people pushing prams or showing off their Bumps.

Ive been through every emotion you can imagine but i know that the only way im going to get through this is with time. Im seeking help with support groups at present and hope that one day soon im going to wake up and all this anger and bitterness will disappear! Just writing this note today has helped me get a little out of system.......

xxxx

FrannyandZooey Sun 13-Aug-06 12:17:53

Jenny I am very sorry to hear what you have been through. Would it help you to start a new thread to discuss it? This thread is pretty ancient and you will probably get more responses if you started your own thread about your own situation. You could cut and paste what you have written here, maybe?

I wish I could offer you some comfort right now. You sound as if you feel very alone.

fussymummy Mon 14-Aug-06 00:42:23

Hello Jenny, I know how awful you feel.
6 years ago i too lost a baby.
I gave birth at 23 weeks.
I still remember it all as if it was yesterday.
The pain has become more bearable now but i still find it hard to come some days.
When it happened i already had one child and people used to say at least you have him.
I tried to explain that my first child wasn't a consolation prize, but a much wanted child, as was the baby i lost.
The hardest part was having to bury my baby.
I visit the grave as often as i can and take my other children with me.
I have since had two more children.

I found that by keeping a journal and writing down all the thoughts that i had, it got them out of my head for a while.
I also had some counselling from the *Child Bereavement Trust* based in High Wycombe Bucks, they do have a website.
They don't only help people from that area, but from all over.
They were really kind and caring, which is just what you need right now.
Take your time to get through this and talk about your lost baby as much as you want to.
Cry when you need to and don't feel you need to be strong when you don't feel it.
Take care and keep in touch. xxx

majormoo Mon 14-Aug-06 16:52:49

goodness Jenny I couldn't believe it when I saw this thread appear, as I started it last year. It is a year on Saturday since my termination and I have been thinking a lot about the baby today. I just wanted to say that I know how tough it is. I think it is good that you are using support groups-as you say things get easier with time. When I think back to how terrible I felt this time last year, it felt like I would never look forward to anything again. But I do. Counselling has helped me deal with the situation, so wondered if you had tried this?

I know how you feel about dealing with seeing other people's bumps. It is hard when your own loss is so raw-I remember going to a child's birthday party that was full of babies and pregnant women a few months after our loss, and I felt I would explode with grief, it was so hard.

I am 31 weeks pregnant at the moment and I still feel a bit odd when people announce their pregnancies to me. Everything seems to be Ok with this pregnancy, but I think it is true to say that I think about the baby we lost every day. I am on an antenatal thread at the moment and earlier today was updating my stats on there. I felt sad putting that this is my second baby, because actually it is my third. I didn't want to bring what is a happy thread down, by talking about the upcoming anniversary. So time does make things easier, but of course the pain is still there and always will be. But it does get easier.
Anyway do take care and give yourself all the time/space you need

fussymummy Mon 14-Aug-06 23:45:12

Hello majormoo. I don't know you and have only just joined mumsnet.
I was reading all your thread from last year with great sadness.
I was wondering how you were coping with everything a year on?
Great that counselling has helped.
Fantastic news that you're pregnant again.
You won't ever forget the baby that you lost, but please be prepared for the memories to come flooding back when you give birth to your precious child in a few weeks.

If you read my previous message you'll see that i gave birth at 23 weeks.

When i had my next child 13 months later, i was besotted with her, but i also felt guilty for all that i missed out on with my little boy.

A huge part of me had been too scared to get too involved in the pragnancy in case i lost this baby too.

When she finally arrived i couldn't believe it.
I was so protective as well.

Please don't feel that i'm trying to put a dampner on things for you, as i would never do that to anyone.

I just wanted to fore warn you.
Good luck and i hope all goes well for you. xx

chezzasaville Thu 31-Aug-06 10:12:56

hi i've just joined mumsnet so its all a bit new to me. 2 weeks ago i had to terminate my pregnany due to my baby having Patau's Syndrome.It was the hardest thing that me and my husband has ever had to go through, but we know it was the right decision. Reading your messages has been a great help for me.Congratultions on being pregnant again

majormoo Thu 31-Aug-06 19:19:57

thank you chezzasaville. I am sorry you have had to go through this as it is so bloody awful. Cliche I know but it does get easier with time. I would really recommend using ARC (antenatal results and choices) as the support group there has really helped me. Take care

majormoo Thu 31-Aug-06 20:01:46

fussymummy-thanks for the tips too. Pregnancy has been loaded to say the least, so am sure you are right that the birth and beyond will bring back difficult feelings

chezzasaville Sat 16-Sep-06 17:22:37

HI MAJORMOO
Just wanted to thankyou for recommending ARC to me and saying how they really helped you.
I rang and spoke to a really nice lady called Sally and she sent me information pack and put me on the website.
It has been such a help to actually be in touch with people that have gone through the same experience of losing a baby due to Pataus.
Everyday is still tough but i know its still very early days.
It'll be 5 weeks tomorrow.
I'm going back to work on wed and fri of next wk, so i'm hoping thats going to bring a little bit of normality back into my life.
I hope you are well
Thanks again
love cheryl

majormoo Thu 21-Sep-06 18:29:23

glad to hear you found ARC useful. Will probably talk to you on the email group!

Hope work went OK.

nicgeodav Sun 23-Sep-07 21:26:53

chezzasaville - my baby too had pataus syndrome. only july this yr. i went for a 12 wk scan all happy to see my baby and take my scan photo to show my son.
that day has chnged my life completely.
everything happened so quickly and everything is so much of a blur.
when it was happening to me i tried to be so strong and was thinking about everyone elses feeling.everytime i put on the tv or read the paper there was something to do with babies or death of babys.

nicgeodav Sun 23-Sep-07 21:30:09

sorry so crap at this kind of thing.
this is the only posative place i have found re termination due to fetal abnormalities.

majormoo Mon 24-Sep-07 20:22:47

Hi nicgeodav. Sorry to hear about your baby. I started this thread originally a couple of years ago now. We also found out at a 12 scan that our baby has Patau's so I know what you are going through. chezzasaville posted her message a year ago so may not check the thread. I would recommend ARC-it is really helpful. There is a fantastic email support group. The web address is www.arc-uk.org.

nicgeodav Mon 24-Sep-07 20:45:04

OH YES ONLY JUST REALSED THE DATES.
JUST READ YOUR ORIGNAL POST. SOUNDS THE SAME ABOUT THE FRIENDS THING I DIDN'T WANT THERE SYMPATHY JUST TO BE NORMAL BUT WHEN PEOPLE AVOID YOU IT IS HARD TO BE NORMAL.
THANKS FOR THE WEBSITE I'LL HAVE A LOOK.
ALSO HAVE YOU HAD A BABY SINCE?? HOW LONG WAS IT AFTER IF SO??

UCM Mon 24-Sep-07 20:50:31

Majormoo, I am sorry that you feel like this. I didn't terminate after going to Kings as I was 37, but I know I would have if faced with the chance of abnormalities like the one you were diagnosed with.

I think you have got to focus on what happens next. It's happened. You can't change it. You must look to the future for your DD. Other than that I don't know what to say but sorry and keep talking.

PondusLector Mon 24-Sep-07 21:46:02

nicgeodav
So sorry to hear of your loss.
I had a baby with Patau's, diagnosed at the 20wk scan. It happened in 2005 and I went on to conceive again five months later. I now have a ds aged 9 months.
Be kind to yourself, people don't really know how to react in this situation. I found myself really withdrawing for a while.
I hope tomorrow is a better day.
My sympathy goes out to all those on this thread who have suffered the same loss.

majormoo Tue 25-Sep-07 18:29:14

nicgeodav, like Pondus, I conceived about 5 months after my termination. My son is one in a couple of weeks. We waited a few months before TTC although this was only because I was waiting for the results of a smear test-otherwise we would have tried straight away. So there is hope after such a dreadful experience.

I think people who have never suffered a bereavement can find it hard to know what to say/how to act. Not that it is much consolation now, but in future you will probably be able to support other people in their grief after this experience.

TOPFAResearch Thu 15-Aug-13 21:26:20

Message deleted by Mumsnet for breaking our Talk Guidelines. Replies may also be deleted.

TOPFAResearch Thu 15-Aug-13 21:26:40

Message deleted by Mumsnet for breaking our Talk Guidelines. Replies may also be deleted.

HotAngryTiger Fri 16-Aug-13 09:10:44

Hi TOPFAResearch - if you want more responses to your research survey you're best putting a new thread in the antenatal tests/choices section where most people looking for support before/during/after TOPFA will go. HTH

Moltobene Fri 13-Dec-13 03:10:00

OP, how awful, I am so sorry.

Just so you know SATFA is now ARC- Antenatal results and choices. They are really good and have a support phoneline and forum. www.arc-uk.org/. Helpline: 0845 077 2290 or 0207 713 7486 from a mobile phone.

Agree with JaninLondon they are fabulous people.

BobbyGentry Fri 13-Dec-13 03:45:46

(((Sorry for the loss of your daughter)))

I would suggest not to cope, just grieve.

Cry, if you need to. Rage if you must.

Grief is a powerful emotion and it can't be controlled (held in.) only time heals but you won't be able to appreciate that salve presently.

The charity ARC can and will offer support. I would suggest you contact them:
www.arc-uk.org

Always loved, never forgotten (motto from the fabulous charity SANDs.)

Hold tight and take care over the coming months

BobbyGentry Fri 13-Dec-13 03:50:19

* Sorry, just noticed it's a year on, hope time has been kind to you x

FanjoForTheMammaries Fri 13-Dec-13 06:29:20

The OP is from 2005!

Join the discussion

Join the discussion

Registering is free, easy, and means you can join in the discussion, get discounts, win prizes and lots more.

Register now