Wanted!! Mums who are pregnant after downs syndrome termination..I am need of support.

[mummytracy]

Hello mums and mums to be, I have two daughters aged 6 and 9. I had a third pregnancy in 2002 which, after triple bloods, resulted in 1 in ten chance of downs syndrome.(I was aged 29) Amio later confirmed this. We terminated this pregnancy at 19 weeks which was not at all a plesant experiance.
After years and years and years of trying to concieve I am pregnant and due in September 2008. I am very anxious, worried and stressed. I have a dating scan due on 7/2 and from then can book the nuchal which has been offered to me free of charge on the NHS.
I am trying not to be too excited as I know that thinngs can go wrong especially when you are not expecting it. I would love to talk to others who have had a healthy pregnancy after a termination which has resulted in their baby not having down syndrome. I need to see some glimmer of light!!
Thank you for taking the time to read this. This is also my very first post.xx

[YeahBut]

Don't have experience but didn't want this to go unanswered. Congratulations on your pregnancy and welcome to mumsnet. Hope all goes well for you.

[jollyjane]

I usually just lurk and rarely post but felt I should to help put your mind at rest. My first pergnancy when I was only 26 I had cvs test at 12 weeks and scans then termination at 13 weeks.
Since then I have had 2 fine preganacies resulting in dd and ds.
However I did have cvs tests with both of them and as a result had relaxing pregnancies. Good luck.

[mummytracy]

Thankyu for your replies Yeahbut and jollyjane.
I am worried about cvs due to the risk of damaging the baby. For now I am going for the scan, nuchal and triple bloods. If the risk is high I will have a amnio.
xx

[chocolatespiders]

no experience but try and stay positve....

very best wishes to you and your family

[ScaredAsHell]

Hang in there mummytracy.

I have just had my nuchal and I have a 1 in 120 risk and am waiting for my amnio on 7th Feb.

Even though people keep telling me there's a relatively good chance it will all be ok I am still scared to death and am terrified what happens if the amnio has a bad result.

I will be keeping my fingers crossed for you and wish you all the best.

[Coolmama]

just wanted to say not to be nervous about the CVS - it is never performed before 11 weeks precisely to keep baby safe and carries the same risk as an amnio - and at least it is done much earlier so you can relax that bit sooner

[mumof4soontobe5]

i have a different ''take on this'' :
i dont usually respond to messages ..lack of time for one! i have four children and am expecting my 5th in june 2009.
i had a dating scan a few weeks back and was told my baby would probably at the very least have downs syndrome. i am 33 yrs.i am refusing any of the invasive tests as i wouldn't want to be responsible should i miscarry . it makes no difference to my family whether or not this baby does have any problems. i am aware this might come across like i am preaching here - but i will say it anyway - i didnt give this baby life..and i can not be the one to take it away.
from experience i know scan and tests can be wrong.
in 1998 i was told my 2nd baby had severe talipes. i was told she would need surgery to correct her ankles and her feet. i have since read that many women are termintaing their pregnancies for things like club feet.
my daughter was born in 1999. and she has the most gorgoeous legs and cutest little feet - nothing wrong at all.
even if she did have an issue - she would have been loved and adored.
please people dont listen to the people who want to purge society of ''imperfections''. isnt life more precious than that? if a baby is born - who by society's standards isnt perfect - and they manage to survive in the womb , and survive the birth despite being given a terrible survival chances by the docs , doesnt the baby deserve a chance at life?
i do wish you all the best. i know how traumatic it is being told news that the baby you are carrying is ''abnormal'' as i am in the same position.

[lou031205]

mumof4soontobe5, that is a great post, and I hope things work out well for you .

I suspect that mummytracy has already had her baby, however, as the baby was due in September.

[mumof4soontobe5]

hi Lou
Thanks for the response.
i only just saw that this topic was started in January
oh well, maybe it will be read by someone else in a similar situation

[lou031205]

No problem. I really do hope that everything works out well for you. I have a friend whose baby was diagnosed with anencephaly at 12 weeks in 1998, and she chose to carry to term. Her beautiful daughter lived a precious 3 hours, and died peacefully in her arms having had a lifetime of love poured into her in that short time. She now has 3 other children, and her story is an inspiration for many.

[chaya5738]

mumof4soontobe5: I am disappointed you used this post to preach to someone and judge their decision. I thought Mumsnet was supposed to be the one place where mothers could open up and trust people to not judge us. These decisions are hard enough without people implying we are bad people and telling us we are taking a life.
The writer already told us she had had an abortion because the baby had Down's so what was the point of your post. Were you just trying to make her feel bad?

[mumof4soontobe5]

My sincerest apologies chaya. I really didnt mean to cause offense. i didnt think i was judging anyone. i suppose we all have our burdens and issues that we are battling to cope with and i would never willingly want to make anyone feel guilty. it was the first time i have replied to a post and i didnt realise it was an old post. i was looking for a support group and i came arcoss that link.
so , please accept my apologies.

[mumof4soontobe5]

hi Lou.
that is my husbands take on the whole thing. he says if he gets just a couple hours to hold this baby he will be greatful. we were discussing when would be the ''best '' time should this baby die and as we have 4 other children i thought it would be easier on them if they never get to meet their youngest sibling. i was worried how they would handle the loss, but hubby seems to think even a few hours of like you say - pouring a lifetime of love in a short time -is better than nothing.
thanks so much for your kind words.

[thenewme]

We felt the same when we were told our baby might have Edward's Syndrome. We decided we would rather have him for a short time than not at all. He didn't have ES when he was born but I would do the same again.

[ajandjjmum]

I really hope things work out for you mumof4..., and that you find the support you need.

We've all done that respond to an old post thing at some time!

[mumof4soontobe5]

oh wow thenewme! i find that so encouraging. the notes from my consultant are so depressingly bleak. i have been told my baby probably wont make it to 16 weeks. ( i am 15 weeks now). and i have been told that if i do carry to term my baby has a 15% chance of being born ''live and normal''.
i have never had the nuchal scan before and it was offered to me free as they saw ''something abnormal'' on the dating scan. next time round i think i may just refuse any of those scans. i have had my own experience of them being wrong and stories are flooding in from other people who were given an incorrect diagnosis.
i am happy that your son didnt have ES and probably even more encouraged that you would do the same again. i stumbled across a site where the people were saying that parents who willingly give birth to a child that has been diagnosed with an abnormality are actually sellfish! i found that very difficult to read , but am finding more evidence of compassion from people who think otherwise.
has anyone seen the ''99 balloons'' video clip. i think it can be found on youtube.
heartwrenching stuff...but strangely comforting at the same time.

this site has been great so far. really nice people. thank you

[mumof4soontobe5]

ajandjjmum : lol. i thought it was just me who could do something like that. what a way to introduce myself! respond to an old post and offend someone all in one go!
thanks for the understanding

[lou031205]

chaya - I don't think that someone who is currently going through such a traumatic process as mumof4.. can be accused of preaching, really. She is not preaching about something that has happened in the past to make someone feel bad. She is writing her story of a past pregnancy and the outcome, followed by her decision for this pregnancy. Why should she not be able to share her emotions and experiences in the same way as someone who would freely express the reasons they had chosen to terminate? Both are equally terrifying choices, I would think.

She also had no idea that this was an old post, and the OP was asking advice for a pregnancy following previous termination, not suggesting that she was likely to terminate this pregnancy.

mumof4... Try to take things day by day. All the statistics in the world can only tell you probability, not certainty. And, if the doctors are right, your children will grieve regardless of whether you allow nature to take its course or step in to speed things along. I think the major difference is that with the choice you have made, they will have positive memories to cling hold of to.

[mumof4soontobe5]

Hiya Lou
Thanks for the advice. you are right. day by day seems the sanest approach to take. I go to the dr each week for her to listen to my baby's heartbeat, and at the end of everyday i am greatful i still have this little precious babe moving and growing inside me.
i guess each day i get with baby J is one more day that he/she will be the most protected and comfortable.
i was reading a post yesterday by some lady who described her stillborn as her baby that was born asleep. i think that has to be the lovliest way to put it. bawled my eyes out..but i love it when people who have been thru' really traumatic things find ways of making it 'beautiful' - if you know what i mean.
anyway, probably taken enough of your time.

thanks again

[needmorecoffee]

good luck mumof4. We were told when dd was born that she wouldn't live as she suffered a lack of oxygen at birth (untestable for) and that if she did she would never know us. So we made every single second precious. 4 years on and she is still here. She has severe cerebral palsy but her intellect is just fine. We know she only has a 50% chance of making it to 18 but I'd rather she was here than not and make the most of every moment. Hours or years, all of it is precious.

[mumof4soontobe5]

needmorecoffee - thats wonderful that you make the most of every moment.and how super that you have had 4 yrs so far. Long may your daughter grow and flourish in your love.
I am being challenged do that now with my other 4 who have no health issues. makes me a bit sad that it has taken a bombshell like this one - to be told my baby probably wont make it - to really realize how precious life is. i mean i obviously love my kids..would be a bit sad to be having baby no5 .. and not love kids...none of us know how much time we have with our loved ones. best to just make each moment count.
like you say ''hours or years all of it precious''!! thats will easily become my favourite saying

[needmorecoffee]

I do wish you didn't have to have the bombshell to appreciate what you got with your 'normal' kids though! I often think that when people are fretting their toddler isn't reading at 3 or something.
Do you have any idea what your baby 'has'? Or how accurta e the predictions are?

[mumof4soontobe5]

well at my dating scan they noticed that there was quite alot of fluid (nuchal trancelucancy) spelling? and asked me to come back a week later.by then i was 11 weeks and 4 days. the fluid measured 6mm and the specialist said the very least of this baby's issues would probably be downs syndrome. he said there was 64.6% chance of there being a chromosonal abnormality.
i know they can be wrong but part of me feels like i need to mentally and emotionally prepare myself incase he is right.

i am probably the most relaxed mom in my circles... 3 of my 4 children have been late speakers(like only putting 2 words or more togther after 2.5 yrs!!!) and i really dont feel the urge to keep up with my friends kids who are reciting the alphabet at 2!! maybe i didnt put across what i meant accurately. i do appreciate my children , but it has taken this news to make me realise the more important things. i was sent this really ''releasing'' email about housework. having 4 kids ranging from 2-12 means that my house is often not very tidy and that used to stress me. the email suggested that a house becomes a home when you can write ''i love you '' in the dust on the furniture. that tickled my fancy

[needmorecoffee]

you read 'A Mother like Alex'? She has adopted 8 children with Downs' syndrome. Some have other issues too. Amazing book. Or read the Blog 'Behind the Child', a mum with 2 severely disabled children.
But when your baby is born, first and foremost, he or she will be a baby. You don't get a 10 stone wheelchair using nappy using person dropped in your lap. you get a tiny baby. Maybe with a few labels. dds's labels were brain damage, cerebral palsy, blind and seizures. But all I saw was a small red haired baby who I willed to live. The labels became part of who she was later on and then disappeared. So now if someone says 'whats wrong with her?', I think 'nothing, why?' cos all I see is dd.
She can't walk or talk or sit or use her hands but there we go. She has a laugh that sets all her classmates giggling, loves school, is learning to use a speech device with her head (Christy Brown eat your heart out). And she's not blind.

[twinkie39]

I have looked for so many support groups for women who have had a termination due to the baby being downs syndrome and i find i feel as though i can share my story in this one. My very traumatic experience happened in 1992 just over 16 years ago when i was 21 yr's old.I went for my routine 20 week scan and i knew something was wrong because i was told to leave the room, then when i went back in there was doctors scanning me and i was very scared at this point. Finally i was told there was a chance my baby was downs because he had excess fluid on the back of his neck, this was a clear sign i was told. I had a CVS the following day and had to sit anxiously and wait for my results. I was living in Jersey U.K at the time as i was working over there, so i had no family at all for support,, only by telephone calls. I finally got my results and unfortunately it was a positive result, this was on a Friday and i was told to come into hospital after a discussion with the doctor for a termination on the Sunday. I have an aunty who has downs and all i could think about was how hard it was for my nan to cope. I was so young and just took the doctors advice without understanding anything. I had the termination and went back to work, trying to be strong, but inside i was crippled. No one would talk about it to me, not even my partner. I was offered a support group for mothers with downs baby's, but advised against it by my health visitor. This is the first time in all these yr's i have spoke about it. The hospital did a post mortem and when i went for my results i was told he was very poorly with heart and lung disease. When i think back now i feel angry because they put me on the ward with other mums who had just had babies and this was in a maternity hospital, i was devastated, i thought they did it to punish me. I feel i had no time to make a decision and i wasn't given enough information, as i thought my baby had downs because something i had done.