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Pregnancy

Talk about every stage of pregnancy, from early symptoms to preparing for birth.

Termination following diagnosis of abnormality

77 replies

Rosy · 23/11/2001 16:34

Sorry to bring everyone down, but I will soon be going in to hospital to have my 17 week pregnancy terminated following an amnio which showed that our daughter has Downs. Obviously we're distraught about it, and the more we learn about it the worse it gets (I will have to be induced, my milk will come in after three days, there will be a funeral...) As we've found, there's not much to say about it, certainly no looking on the bright side, but I would welcome other people's experience of it, and reassurance if there is any. Thanks, Rosy.

OP posts:
Lisav · 26/11/2001 10:49

How are you Rosy? Please do let us know what has happened. And will everyone please stuff the pc wording for now, we all know what we mean!

You said that the more you learn about it the worse it gets, was that the Downs? Just to say that doctors do tell you the worst case senario, especially with Downs. Tracey was told the baby might not last 5 minutes, he would be floppy and limp, short limbs, etc, etc. They have a duty to tell you all this I guess, but the doctors don't tell you about all the beautiful things, little Ethan looks gorgeous, he doesn't look Downs in the slightest, he can lift his head up and is looking around the room already. There are different levels of Downs, some people have it worse than others, but no-one knows how bad it is until the child gets older.

Also I have not met anyone with a Downs who have said that they have regretted it, not ever. Please don't make a decision that you may later regret. As Zadie said, it might take a long time to get over it.

I really do wish you the best Rosy in whatever you do. I don't envy you this decision and it is easy for me to just sit here typing out these responses. It has never happened to me so I am in no position to offer advice or cast judgement. Take care and do let us know how you are, our biggest concern is about you.

Tigermoth · 26/11/2001 11:46

Rosy, my thoughts go out to you. It sounds like you have already made up your mind about the termination - almost. But you want to feel you have considered everything, so you will feel at peace with your decision. I sincerely hope whatever the final outcome, you find peace.

As an older mother of two, I had to have an amnio each time. I never had to face the decision you are facing, so I don't know how my emotions, on hearing the news, would have affected me. Before the first amnio, I was worried about my fertility. I had tried to get pregnant for two years, and had had one miscarrriage. I did not know if this pregnancy would be my last. That admittedly selfish desire to have a child (I admit I viewed things mostly from my angle, not from the angle of the unborn child I was carrying) would have made a decision to terminate very hard.

The second time my priority was my 5 year old son. If having a sibling with downs would seriously lessen the time and attention he recieved from me, I decided his needs took priority over my unborn child's. So, if I had been faced with the prospect of a downs child, I would have done as much research as possible to see how the rest of a family would be affected, and IF that left me feeling pessimistic, I would have considered a termination very serioiusly indeed.

I do not know if you have a child already, Rosy, or intend to have more. I don't know if you have much personal experience of people with downs sydrome.

I really do hope you get all the information and emotional support you need to reach the decision that's right for you.

Lil · 26/11/2001 11:55

Rosy, I really feel for you as I have just had my scan at 20 weeks and the thought of losing a baby at this stage would be heart-breaking. I think you have made a strong and sensible decision and I don't think you should dwell on future regrets. Despite some of the positive images given by some mums on this thread, not many parents could handle a disabled child, its a life time decision which affects all the family, and it must be difficult for parents worrying about who would look after their child when they are gone. Instead, take a deep breath and get through the day by thinking about the space you've made for your next child that might never have been!
Lilxx

Smew · 26/11/2001 12:35

Rosy, my previous message seems to have gone missing so, at the risk of reapeating myself, I really wanted to say that I think you have made a brave but very positive descision. I think it's unfair to talk about women who regret having terminations - what happened to a woman's right to choose? This is highly emotive I know but, whilst some women regret having had a termination there are plenty who very definately don't.

Also, I have a friend who gave birth to a baby with Down's when it hadn't been detected antenatally (she was in mid-20s and had normal blood screening). It had a catastrophic effect on both her existing child and her marriage and culminated in the baby being adopted. She has always said that she wouldn't have continued with the pregnancy if she had known. The effect on you and your family is the most important consideration and I'm sure you have thought this through very carefully.

I don't disagree with the comments made about how rewarding a child with disablilty can be nor do I think this is an easy thing to go through with. I just think that every situation is different and that you have made the descision that is right for you. Don't add guilt on the part of others' opinions to all the other emotions that you must be feeling. You will come through this horrible experience and you will be able to look forward to the future and to more children, if that's what you want. I wish you and your partner lots of love and all good wishes for the future.

2under2 · 26/11/2001 14:39

Rosy,
I am sorry to hear what you're going through, but as a mother of a seven month old girl with Down's I just wanted to write and urge you to think this through very well and not rush into something you will regret. Even if you don't want your daughter there are many couples out there waiting to adopt a baby with DS. My little girl is an absolute joy and a cute little poppet. She's no different from an ordinary 7 month old baby and doesn't place more demands on us than her two year old sister did at this age (actually, she sleeps through as opposed to her big sis). She's reaching milestones just like an ordinary baby, has crabby days, days when she's happy etc. She loves people and is really babbly and interested.
Things have really changed for people with DS in the last ten years or so - there is no question of whether my girls will both be going to the same primary school - of course they will! And yes, my youngest might need a bit of assistance, but that's not a big deal.
The adults you see with DS nowadays never benefitted from education and proper medical treatment, and of course the result is not pretty, but this new generation really has a bright future ahead of them.

All the best, whatever you decide.

Roglyn · 26/11/2001 17:37

Rosy

I have just been through a similar experience (termination for Down's syndrome following CVS) and my heart absolutely goes out to you. It is the most excruciating and painful experience. I am so sorry.

Only you can decide what you're going to do. It's a completely personal choice and noone chooses to terminate lightly. What you need now is support and friendship and not advice about alternatives, well meant as that advice may be. If you feel that a termination is best for you and your family and the baby then that's your choice and, hard as it is, you shouldn't feel guilty.

Try this website and email list where you can chat to others who've been through this most painful of griefs.It has been very comforting for me. www.aheartbreakingchoice.com.

If you would like to get in touch with me I'd be very glad to give you my email address but I'd rather not post it here - can anyone at mumsnet help us to do this confidentially?

Hang on in there Rosy. You will get through it. Many hugs to you and your partner. Hope we can get in touch.

roglyn

Janh · 26/11/2001 19:53

Roglyn, I think if you send an email to Mumsnet (via the homepage?) and ask them, they will give your email address to Rosy.

Momof3 · 26/11/2001 23:10

Rosy~I am a mom of a daughter with Down Syndrome. I was saddened by our post and I just had to say something. We didn't know our daughter had Downs until she was born. All of my prenatal testing came back normal. Yes it was a great shock to our family, but it was also a joyous day. We had a perfect baby girl. It sounds like you have done some research, but I strongly reccommend that you get in touch with a support group in your area, the information you will get is alot better then what you will find in out of date books.
Although my dreams of having a typical baby are now gone, I have new dreams for my daughter. She
will have a very full life with many victories and yes many setbacks, but so will my other children. Our lives have taken a different but wonderful path, I thank God everyday for what he has given me.
In your post you wanted reassurance, I cannot offer that. I can only tell you that this baby would give you more joy then you could possibly ever know, yes your life would change, but deciding to keep this baby would end all the "what ifs" you will face down the road.
I will pray that you have thought this decison through and that no one is influencing you to terminate you pregnancy because of the Downs.

Honeybunny · 26/11/2001 23:35

Dear Rosy
I'm so very, very sorry to hear about what you are about to be going through. I know it will be an extremely tough few days/weeks/months to come but with support from your other half and family and friends, you will pull through. My thoughts are with you and we send lots of love.
I went through something similar 2 years ago with my first pregnancy. They found serious cranio/facial abnormalities at the routine 23week scan, and we opted for termination. My only advise looking back, is to read every bit of literature they offer you and then ask lots of questions so that you feel prepared for everything thats going to happen. I was told that from induction to delivery would take on average 12hours, only for me it was 36hrs. No-one mentioned the possibility of needing a d+c immediately afterwards, but I had a retained placenta so needed wheeling down to theatre. 3weeks later I was having another one for yet more retained products that were missed first time around. They just don't tell you this kind of thing at the time. I was given the impression that before I knew it I would be pregnant again, and that next time things would be different. I suppose it was the only reassurance I wanted at the time. I didn't have a period for 4months and became paranoid that I'd suddenly reached the menopause at 32! I declined counselling, just didn't fancy talking over any of our very personal decisions and experiences with a complete stranger, no matter how well qualified, but you may feel differently. What helped me most was being able to talk openly about every little detail with my husband, often over and over again. He was with me throughout, and was a huge tower of strength. Still is, bless him.
We had a very small funeral and cremation for our son, just myself and hubby. It felt like closure almost, yet for us we still had to await postmortem outcomes and face the fact that we'd been labelled with a possible genetic/recessive trait, that may or may not come up again with our next pregnancy. (1 in 4 chance)
We went away for a few days to a very wet and windy north devon coast, just to be on our own and mourn. I think that really helped too. We booked a ski-ing holiday over what would have been our "due" date, which gave us something to look forward to. It also persuaded me while we were ski-ing to start living again and that it was ok to have a good time.
I'd had a miserable return to work after 5weeks off sick. People treated me by avoiding my eye, turning away, and generally ignoring the whole issue. I was devastated more by this than anything else. I wanted to tell people what had happened. I wanted to be able to talk openly, and to have tearful days if needs be. But felt I had to do the "stiff upper lip thing" instead. If its possible write to your work and explain what has happened and if like me you want to be able to talk about it, then reassure them that you won't dissolve into a puddle of tears but that it would help to be open and up front. I also found some family members were totally incapable of dealing with grief too. I found it hard not to judge them for it, but its such a british thing isnt it, we just don't talk about death/loss/grief. Its just a bit too difficult and embarrassing.
We planted a tree in the garden in remembrance of our son, and made up a scrap book of every part of my pregnancy up to the end. It has all the letters of condolences and paperwork form the hospital, plus a photo of our son. It sounds a little macarbe (spelling!) but its all I have left of our baby. Walking out of that hospital with nothing was agony. Having nothing to hold onto or remember him by was just hideous. I hadn't even had the chance to go out and buy him a toy or body suit or anything. Makes me well up just thinking about it now.
On a happier note for us, we conceived our second son over our "recovery" ski-ing holiday. And despite an extremely stressful initial 24 weeks (4 scans to make sure that everything was ok) my pregnancy went on to 42 weeks and 2 days, when finally out came our most gorgeous baby boy. He's just had his first birthday, and I love him to bits. But I still think about our first, if not for him then I wouldnt be looking at my one year old today.
I've rambled on, and am now feeling a little self indulgent, but if anything I've written helps you and your family, then its been useful. I'd be happy for you to contact me if you want. If there's anyway I could help, I'm sure mumsnet can put you in touch.
My deepest sympathies, I will be thinking about you over the next few days and hope that everything goes quickly for you.

(One final piece of advise, go for pain relief early. I had an epidural, so felt very little of labour pain, yet was able to cat nap at times, and stay lucid throughout. I've spoken to some people who opted for pethidine in the same circumstances, and can't remember a lot of what went on, and hate themselves for it. I could still move around, and didnt need a catheter, so felt my dignity remained intact from that point of view. And finally, I'm glad that everyone persuaded me to see my son. I was terrified that I was going to be presented with some kind of monster, but they'd dressed him and laid him in a moses basket, and he looked very peaceful. I just remember his perfect hands and feet, and although his face was very mishapen, I could see that he had the most vivid blue eyes.

Jbr · 27/11/2001 00:22

You are disabled by society, not accommodating your difference, not by what's "wrong" with you. If it's an access problem it's a disability, if it a difficulty you personally have then it is a difficulty obviously! Doh!

Anyway this just shows how little we value certain people.

Batters · 27/11/2001 09:58

This reply has been deleted

Message withdrawn at poster's request.

Tigermoth · 27/11/2001 10:36

Agree! Jbr, if you want to begin a discussion on how society views disability, or whatever words you prefer to use, why not start another discussion thread? I'm sure you have much to say on the subject and would be able to enlighten us a lot.

Rosy is obviously having a very tough time right now. She specifically asked if other people had experienced her situation and wanted reassurance. That's all.

Enid · 27/11/2001 10:40

Rosy, I have no advice I'm afraid, just lots of love and support. Please do use mumsnet to talk about it afterwards.

Jbr, how can you be so petty? Especially after reading some of these incredibly moving and personal posts?

Bugsy · 27/11/2001 10:41

Dear Rosy, I hope you are OK. I have no experience and no guidance to offer but you are in my thoughts & prayers.
This thread is heart-rending. We are going for our anomoly scan next week and I know that I personally couldn't terminate a baby with DS. I am frightened of making a decision about someones life based on eugenics.
However, I understand that we all have to make our own choices and that is why my heart goes out to you Rosy.

Ariel · 27/11/2001 11:32

Rosy. im so sorry,the only thing i can say to you is know what ever you decide to do is the right thing, it may not be for other people but your decision is right for you,i hope i makes sense.I have a disabled(sorry if that word offends anyone,its what ive decided to use) 4 yr old who requires a heck of alot of care,im also 4 mths pregnant and decided early on that if a problem was to occur again termination would be a strong possability,i simply couldnt cope,as well as it being unfair to my other children,and also to a new baby who needed alot of extra care,ispend alot of time in hospital with my little girl,we decided that to bring another baby into the world who required this type of care was not an option, im sorry if that sounds heartless,its not meant to,i dont think some people relise what hard work ,physically and emotionally and mentally it is to care for a child with these degrees of special needs.I wish you all the best,my thoughts are with you

Carriel · 27/11/2001 11:33

Roglyn,
If you email us a message - to [email protected] - we'll forward your message onto Rosy.
Carrie

Wendym · 27/11/2001 13:07

I know well five families with downs syndrome children. The two mildly handicapped children have been a source of joy to their parents but also considerable worry, especially as they get older. The other three have behavioural and physical problems. Life has been extremely hard for the families and they do sometimes admit they wonder if they should have put a child through this. In two cases the parents decided not to have other children, in the third family it is also very difficult for their other child.

None of us can know what Rosy's position is or how her child might suffer. She has made her decision and in my view no-one has the right to question that decision, even if their circumstances have some similarities. She needs what comfort we can offer. I'll be thinking of you Rosy. I'm sorry I don't know of anything to help.

Lisav · 27/11/2001 14:44

To those of you who quite rightly say what hard work a disabled child is and how much it upsets the family and any other children, please don't look at it in just black and white terms. There are not just two choices in this, there is a third. As 2under2 stated (and your post was very moving) one person's misfortune could be another's joy and happiness. I can think of no better comfort than the thought of your baby bringing happiness and fulfilment to another family.

But whatever Rosy decides to do, the choice is hers to make and I don't want to add guilt to the turmoil of emotions she is already suffering. Let us know how you are doing Rosy and if any of these responses have helped you in any way. Please don't be scared off telling us your decision, no-one here on Mumsnet will condemn any decision you make. Just get in touch soon.

IDismyname · 27/11/2001 21:39

Dear Rosy
My heart goes out to you; nothing can ever prepare you for the difficult decision some of us have to make in our lives. I think you are a very brave person, and I'd think the same if your decision had been different.
The help and advice that others have put forward have made me have a good cry this evening, and have made me realise just how lucky most of us are.
You are very much in my thoughts and prayers. Come back on line soon and tell us you're OK. We're thinking of you.

Robinw · 28/11/2001 06:57

message withdrawn

Joe1 · 28/11/2001 09:40

Chill out Robinw. Im sure Rosy didnt expect to get a onesided reply to her message and we have all given her support to HER decision. There is only one message, as I can see, that has not.

Honeybunny · 28/11/2001 13:20

I agree with Robinw. The situation that Rosy is facing is an emotional minefield. You think that everyone you pass in the street knows what you are about to do and is judging you for your choice. As Robin said, Rosy and her partner have made their choice, and tough though it may be for other Downs syndrome families to accept, Rosy doesn't need the added guilt trip of people trying to make her reconsider that decision. It took me months to accept that the decision we had made was the right one, even knowing from PM results that should our baby have survived to term, he wouldn't have lived. Even now on a bad day I shed buckets of tears for the ds I never got to know, beyond the kicks and somersaults of movement I felt whilst pregnant. So please everyone, lets just support Rosy and her family, and wish them a speedy passage through this, their nightmare.

Suedonim · 28/11/2001 14:17

I agree with Honeybunny and Robinw. Some of the comments may be less than helpful to Rosy. We don't know, by now, she may already have been in hospital and to come home to messages asking her to reconsider her decision could be very painful. I've had to endure a month's wait for an amnio result, and I know the agonising we went though during that month. Yet it can be nothing compared to what Rosy is going through.

Take care, Rosy.

Janus · 28/11/2001 20:15

I too think people shouldn't be trying to offer an alternative here, Rosy has decided what SHE wants to do, this isn't up to anyone else to discuss let alone bicker about ridiculous things like the correct terms to use.
Rosy, I wanted to say I'm so sorry, no-one can even imagine what you're going through unless they too have gone through this. All I can say is that my thoughts are with you.

Faith · 28/11/2001 20:28

Yes, I absolutely agree with Robin, Honeybunny and Suedonim. On first reading Rosy's thread it seemed clear that she had made a very tough decision, that noone can really comprehend unless they have been in that situation. Rosy was hoping for reassurance, and I felt that the only people who should respond were those who had gone through a similar tragic situation and/ or could offer some reassurance. There were postings to which I felt like replying, but it did not seem appropriate.
Rosy, if you have been able to bear to read this thread, all my thoughts are with you. You have had to make one of the hardest decisions any of us can imagine. I'm so sorry.