Trying to fall pregnant after sadly terminating a pregnancy diagnosed woth downs syndrome

(55 Posts)
juelgaz Sun 13-Apr-03 21:02:41

Hi, I am new to mumsnet, any one out there who can advise me after terminating a pregnancy last december due to diagnosis of downs syndrome.i now would like to try again, but am very nervous.

sobernow Sun 13-Apr-03 23:05:25

Hello, juelgaz - I'm not posting with direct advice but having read your post, I didn't want to ignore it. Are you asking about the probability of conceiving another baby with Downs Syndrome? Are you worried that having a termination will affect your chances of conceiving? I have no direct experience of Downs Syndrome but am very familiar with the fear that, having had a termination, you may not feel you 'deserve' a healthy baby. I hope someone else on mumsnet can be more use to you, I don't know what the statistical likelihood may be. But I do wish you the confidence to go ahead and try for another baby

SoupDragon Mon 14-Apr-03 07:32:03

Sorry, I can't help either but there is someone on the board who's terminated because of downs. They've not posted since the beginning of April - may be away?

Hopefully they'll see this thread anyway.

Tinker Mon 14-Apr-03 08:23:53

Yes, would just like to echo sobernow's comments. Perhaps you could tell us a little more? But many (most?) people who have had a termination then go on to have a healthy baby.

oxocube Mon 14-Apr-03 08:55:32

Hi Juelgaz, Are you an older mum? Is this why you are worried about a future pregnancy? No direct experience of Downs but my cousin had a termination for this reason about 9 years ago and the doctors she spoke to said it was simply a fluke of nature that her baby had this condition as she was very low risk given her age (24) and family history. She went on to have two sons with no problems in her pregnancies or with the babies. Hope someone else can give you more specific advice and good luck.

zebra Mon 14-Apr-03 10:01:00

I'm pretty sure Juelgaz will have a slightly elevated risk of another DS baby. Maybe because something like 5% of DS are genetic (ie., *not* chromosonal accidents).

But the elevated risk of another Down's (or similar) baby is still quite small, something like 5% higher than otherwise would be for age. The odds are probably at least 90% in Juelgaz's case that the baby will be ok this time.

One thing to consider is whether to get CVS (chorionic villnus sampling?) at 12 weeks, which is nearly as accurate & safe as amnio, but tends to give faster results & much earlier.

Rosy Mon 14-Apr-03 10:02:03

Hi Juelgaz - I terminated a pregnancy for Downs about 18 months ago now. (If you use "search board" you'll be able to find out what I posted.) I was also very nervous about conceiving again, and about something else happening to me, but that's all normal. As other people have said, conceiving a baby with a trisomy is usually just a fluke, and you'll probably go on to have a trouble-free pregnancy. I had an amnio in my next pregnancy anyway, just to put my mind at rest. In fact, the care I got from the hospital was great, which made things alot easier.
I could talk about this for a long time, but the upshot is, I now have a 7 week old son who is wonderful in every way. If there's anything specific you'd like to know, please ask, otherwise you can contact me through Mumsnet. Good luck.

NQWWW Mon 14-Apr-03 11:03:11

My sister had 2 top's in successive pregnancies - one was for Edwards syndrome, the other for another chromosomal abnormality (very rare and didn't have a name). The doctors were astonished when she had her 2nd diagnosis, as they said the two were absolutely and totally unconnected and that the chances of anyone having this happen were very very small. She was still worried, and almost decided not to try another time, but in the end was persuaded by the doctors that her chances of a normal pregnancy were just as good as anyone else her age, tried again and had a very healthy baby daughter. HTH.

juelgaz Mon 14-Apr-03 19:34:13

Thankyou to everyone who has left me a messeage. I am an older mum, I already have two DDs, 7 & 9, I am now with a new partner, and would love to be able to have a child with him. I am 36 years old so I do relise that my chances of having a dowms baby are alot higher than normal. My heart and support goes out to all of those parents who love and bring up children with downs syndrome, but I did not feel that I could do so. I had a nuchal scan at 13 weeks, this showed a problem, I then has a CVS which confirmed that my baby had downs. Making the final decision was the hardest thing I have ever had to do in my life. I had brilliant support from my partner, family, friends and the hospital, and now feel that I want to start thinking about trying for another baby.
Rosy, your message touched me so much,I would like to know a little more, if that is not too personal. How old are you? How long did it take before your cycle got back to normal? Did you worry lots with your next pregnancy? etc. etc. I am going to read your other messages now.

bundle Mon 14-Apr-03 21:46:29

juelgaz, I do hope you take heart from people's positive experiences and hope that the 'odds' don't frighten you too much - I've had amnios with both my pregnancies (now 38) one because of higher than average Downs risk,the other for Edwards syndrome (I would have opted for termination if either had been positive) as I couldn't have coped with not knowing in either case. good luck.

mindy Mon 14-Apr-03 22:11:42

juelgaz
I also had a termination following a downs diagnosis - my situation was slightly different in that I was pregnant with twins following ivf, again, I have posted about this on a couple of other threads, one that rosy mentions and another titled amnio I think.
My thoughts and feelings at the time were v similar to yours - I did not see how I could manage with a 2 babies, one with downs and also ds. Added to this was the risk of losing both babies if I had a miscarriage later on. Again, much admiration for those who do, but it was too much for me to deal with.

At the time I was 34, we have not tried for another, partly because of the whole ivf/icsi cycle but also because I also am afraid of it happening again. I found both conceptions and pregnancies v stressful and though dp and I have talked about it, the urge for another is not so strong as to overcome these feelings.
I think the worry of it happening again is natural, has your hospital or midwives offered much info on ttc again?

If you want to talk about this offline I am happy to do so, ask tech for my email, though I know my own situation is slightly different now to you.

congrats rosy on your new son,
love mindy

juelgaz Mon 14-Apr-03 22:14:32

Thanks Bundle. Helps to know that given a similar situation you would have probably done the same. There is never a day goes by that I dont think of my litle cherub, and wonder whether I did the right thing, but then I remind myself that I made that decision for all of my family, and for my little cherub too.

juelgaz Mon 14-Apr-03 22:19:34

Thanks for your message Mindy, my heart goes out to you too, Its a horrible decision to make isnt it. I would love to talk more, its so good to find someone who has experienced a similar situation, sad though it may be. I am going on holiday for a couple of weeks, will contact you when I get back if that is still ok.

juelgaz Mon 14-Apr-03 22:21:26

Rosy, so sorry, I forgot to congratulate you on your new son, Hearing that gives me hope.

bundle Mon 14-Apr-03 22:21:45

juelgaz, I have no hesitation in saying that I would have gone ahead with termination - but that doesn't mean it would have been easy and I know like you I would have mulled it over forever. a dear friend of mine had a late top for another trisomy which meant she had to go through labour and even though she knows it was right I know it still hurts her and she's not managed to maintain a pregnancy since. heartbreaking for her, but the odds are better for most women, I'm sure. just make sure you ask lots of questions and don't let things fester, get the medics to explain what's possible/probably as much as they can, though they're not infallible either.

mindy Tue 15-Apr-03 09:25:15

It was a difficult decision, but thinking long term I know it was the right decision, I still find it very difficult to see newborn/baby twins and think about it often, it does not upset me in the way it did at the time but there will always be a sadness there I guess,
Have a good holiday, and talk to you when you get back, mindy

Rosy Wed 16-Apr-03 16:36:50

I was only 32 when I got pg for the second time - yes, you are in a "high-risk" category if you're over 35, but it's probably not nearly as high as you think. There are certainly plenty of mums on here who have had children after 35 without any problems.

As I said, I had an amnio this time round too, even though there were no other factors (eg. AFP results) that indicated I should. I was almost able to deny to myself that I was pregnant, and it was a bit like finding out I was pg at 17 weeks when I got the results, and the rest of the pregnancy seemed to go very quickly. We got a scan at 12 weeks - usually at about 16 weeks now in our hospital - and as everything seemed fine, we opted to wait until 16 weeks to have a less risky amnio rather than CVS. At least nowadays you get the results of an amnio very quickly. Once I'd got the favourable result, I didn't actually worry too much - looking back, I realise I was more concerned about an undiagnosed breech presentation!

On the subject of trying again: I think my periods returned quite quickly, and as we've not had any problems conceiving, I more or less chose when I wanted to have another baby. Personally, I don't think any time is "too soon". There's no doubt that being pregnant again & having my son have helped me get over the loss of my second child.

It is hard to come to terms with the fact that you've chosen to end the life of your own child - there are days when I can hardly believe I did such a terrible thing. I'm still convinced I did the right thing though, and that makes things easier to accept. I'm glad you're getting the support you need from those around you.

ThomCat Tue 29-Apr-03 17:44:43

I'm so sorry but I have to say how upset I was at reading this thread. I just want to let anyone reading this thread know about the special needs section on Mumsnet, if you're at all worried about your asy et unborn child. There are some very positive comments there, esp from me(!). I'm sorry for all the Mum's who terminated because they were told their baby was going to have DS, but my 16 month old daughter is truly amazing, healthy and so happy and it needn't be a terrible thing at all. I'm so sorry if I've now upset anyone with my comments, truly I am, I just needed to point out some positive feelings about DS incase any expectant mothers felt worried, sorry. To finish off if God or soemone(!) told me they would take Charlotte's DS away I would tell them to leave her alone and not change a single thing about her, she's perfect.

ThomCat Wed 30-Apr-03 12:07:44

What made you not want a child that would have Downs?

pie Wed 30-Apr-03 12:20:17

ThomCat

Without wanting to start a flame war..did you know your child had downs before birth?

jasper Wed 30-Apr-03 12:24:35

Thomcat I have no personal experience of this but wanted to say your posts are great and very educational for people like me who are completely ignorant of bringing up a baby who has downs.
Your daughter sounds amazing.

mum2toby Wed 30-Apr-03 12:26:22

Again - I'm not trying to inflame a situation here, but..... why would someone SO desperate for a child that they try IVF, who finally gets pregnant, why would you terminate because of Downs???? Just a bit confused here. I do not have a downs baby, but I feel that's a bit like saying..... We're really desperate for a baby...as long as it's genetically 'normal'.

mum2toby Wed 30-Apr-03 12:28:00

Great post Thomcat.

I work with a man with Downs. He is 36 and is the happiest person in here!! He lives in his own flat and makes his own way to and from work on the bus. He's worked here for years and everyone just loves ..... even though he talks too much.

pie Wed 30-Apr-03 12:35:27

As some of you know I am due to have an amnio tomorrow to check for Downs and Spina bifida. My husband I both feel that if the tests are positive we will seriously consider a termination. Not because we only want a perfect baby but because our circumstance would not be good to bring a child who needs life time care (to a greater extent than a 'normal' child). I have long term illnesses that have led to my becoming disabled. I have my own full time carer and have been indebted to my mother and social services for helping me to keep my DD and DH together. Our family life is happy, but with a lot of help and effort.

The bottom line is that my DH and I are unable to say with any confidence that we are equiped to cope in such circumstances. I know that a child with Downs can have a healthy happy life, but they can also have major heart, gland and brain problems.

As a teenager I was closely involved in the care of my cousin who was born with muscular dystrophy. Not once in her entire life did she hold her head, walk, talk or even move her own arms. For the last 3 years of life she had to be fed through a tube. She finally died of a heart attack at the age of 6. I've seen what this does to a family, I know that I couldn't function for almost a year afterwards. And to willingly go into such a situation frankly takes a lot stronger person than me.

elliott Wed 30-Apr-03 13:11:26

mum2toby, people who have IVF are really not so different from everyone else. I fail to see why we should meet some supposedly higher moral standard just because we've had to go through more than most to get pregnant.
I also think this is an inappropriate thread in which to criticise those who have made extremely difficult decisions to terminate. I don't think that is what the original poster was looking for.

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