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Pregnancy

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

am pregant again after a termination for downs

341 replies

busierbee · 14/03/2009 20:51

I traumatically and sadly had a pregnancy with a downs baby last year. I am 42. I am pregnant again - ten weeks - and consumed with fear and anxiety. Although there is no genetic basis for downs, the risk of having another downs pregnancy is higher than for a woman who has not. Am having a cvs in two weeks. Has anyone been or is anyone in this situation? need a friend

OP posts:
linspins · 29/03/2009 18:08

Oh Busierbee, I'm sorry today has more more than usually crap. Yes, before Daisy's birth I was so sad I barely cried. I felt like I was moving and thinking in slow motion, and all I really wanted to do was stroke my tummy and say 'sorry.' It's the kind of pain that feels like a lead weight round your heart. I remember after Amy I felt like my heart had just broken into so many tiny bits that it would never ever mend, and that I would never smile again without a weight inside me. But I'm still here, living, breathing, loving. (With credit due to friends, family, therapy, my toddler, and of course - time.)
Do you have a date yet? I hope you find a place to go where the staff will be as caring as those I had.
You've said you think there is no hope for the future...but if they find it isn't genetic, there would still be hope. Bad bad things happen to the loveliest of people, twice, - I know this!
I can't believe the eloquent way you write back to all of us. Take treedelivery's advice and just snuggle up with the softest things and cocoon yourself.
Love Lins xx

KristinaM · 29/03/2009 18:23

I have no words of advice, just wanted to say I am so, so sorry . I wish you wisdom and peace for the difficult decisions you have to make

busierbee · 29/03/2009 18:32

Thank you Lins and other lovely new post person - your message brought tears to my eyes - you are exactly right - there is a heavy stone encasing my heart that feels it will never lift. I know from the past that it will and yes I also feel that my smile will never be.. free. I do not have a date - can not get hold of lovely consultant from last time. I too am stroking my soft tummy and my swollen boobs and feeling so tender. My children have been away today and now they are back and that will help. And the days will pass and the rawness will subside. You too have been eloquent and insightful and I thank you for it. There is a community of women and their families who are sharing such personal agony and that does offer comfort. It is touching that in the midst of pain people can open up to each other.
BB xx

OP posts:
treedelivery · 29/03/2009 21:32

How you this evening busierbee?

HedKandi · 29/03/2009 23:00

thinking of you and your family bb

busierbee · 30/03/2009 12:29

Thank you new poster and to you too tree. My daughter home today - she is sixteen so is distracing me. To illustrate my state of mind - we have just had a fire in the kitchen - set fire to some bacon - fire brigade came out. Much wailing and swearing and blind foolish panic from me. Think my daughter thinks i have lost the plot. She may well be right. Did not sleep last night - last few nights have been able to sink into oblivion. Not last night though as i know what is ahead for us this week and is too much to bear. Big thank you for support -so much appreciated.
BBxxx

OP posts:
nanbred · 30/03/2009 15:32

Hello Busier,

Not sure how you are feeling today? but just wanting to be supportive at this time. I have not been through the same level of shock and trauma as you have recently. However, blood tests show that my pregnancy is failing, and not viable, so I am grieving also.

I am worried that this may be a recurrent theme given my age, and wonder about the ability I would have to keep going through such painful loss. However, my instinct is to keep trying, but this is very different from how you must feel in a position where you have to make a choice at this stage.

When I had my termination in Nov 2007 I was told there was an increased risk of 1% for Down's in the future. This felt very small in comparison to the already very much higher risk attributed to my and dp's age. What this meant to me was that it was such a negligible increased risk. I guess I am trying to convey hope for the future, even though you have been so shocked to have two Down's pregnancies.

I hope this thread does not turn into a moralising debate about termination for Down's. To you, your baby is your precious baby and I know how horrific it is to have to make a choice, but whatever choice anyone makes in your situation is to be respected unquestioningly. My advice, though, would be to try to persist in asking for and reading plenty of good, detailed information about Down's and about any other complications your baby has, before the choice is finally made, and to try to take your time to adjust to the news.

I know the shock can cause you to make a decision in an attempt to minimise damage, but if you can bear the pain to give yourself time to walk through the shock and out the other side before deciding what to do, it could lead you to feel more comfortable about the decision, whatever that is in the end. I made a decision quite quickly with my partner, because we were horrified that our baby may die later in the pg due to heart and circulation difficulties in addition to Down's. I am still often wondering 'what if...?' questions, and I am concerned that we reacted so strongly so quickly. As is often the case though, the decision making somehow eases the pain of being uncertain, which is horrific and unbearable, but knowledge helps you get a grip on things in a more healthy way, so leave no stone unturned is my advice.

I am not sure if you already feel you have done this, and would be frustrated by my post (truly sorry if so) but I hope you feel this advice is useful, and that it may help others in the same situation.

Whatever and whenever the decision, I know it will be the right one for you and your baby. Take care of yourself....Nan x.

cazboldy · 30/03/2009 16:00

sorry for what has happened to you bb

I by no means wish to patronise you, but are you very very aware of Downs? I only ask as you mentioned thinking of your older children in the future etc

It's just that if there are no heart defects/ other complications on top of Downs, people with downs really can live a very full life. I know of two adults with Downs that manage to hold down full time jobs. 1 lives with a partner (who also has sn - mild cerebral palsy) and 1 lives in a kind of sheltered accomodation, in his own flat, but with someone close by if needed.

You really cannot underestimate he joy that some of these lovely children bring to not just their immediate families, but everyone around them.

If this baby is so longed for, is 1 extra chromosome really too much?

You could see if there are any groups near you where you could spend some time with some families of children with sn.

You may still decide you cannot continue with your pg, only you can decide.

For all i know, you may have already done this or something similar, and I really am not trying to say that you haven't thought it through, so please don't think that.

If I am overstepping the mark I am sorry, but I just couldn't say nothing

Thinking of you xx

sydneysuze · 30/03/2009 20:16

Busierbee I have been following your thread and have been so touched by your generosity of spirit in sharing everything that has happened to your family. I am sure that you have helped countless silent women reading your posts to feel less alone in their own pits of fear and grief.

I lost my first baby to an inoperable heart condition at 24 weeks pg last year, and in 3 weeks' time will have a fetal heart scan to see if the baby I am carrying now has the same condition.

The death of a baby is a devastating, ongoing agony that is terrible to bear. Take comfort in your family and friends, including the countless women here who want to support you, to bear some of your pain for you. The thing that got me through
the labour and delivery of my beautiful baby boy was knowing that my DH and I were taking on all that pain so that the baby never had to feel any of it. One of the hardest things to cope with can be grieving the future that you had hoped for, be gentle with yourself and feel everything you need to feel.

I found two books useful: 'Help, Comfort and Hope after losing your baby in pregnancy or the first year' by Hannah Lothrop, and 'When a Baby Dies - the experience of late miscarriage, stillbirth and neonatal death' by Nancy Kohner and Alix Henley. I got both through Amazon.

Sending you much love and warmth, please keep posting and telling your story as much as you need to.

To those posters who seem to think Busierbee has made this decision too lightly - shame on you. No-one makes this decision lightly. Read all the posts and reflect on the insensitivity that you have shown to a truly courageous and broken-hearted woman.

cba · 30/03/2009 20:32

Hi Busierbee,

I have been following your thread and have cried buckets. I am pregnant with number four and went for a nuchal scan last week and was petrified, as I knew that had there been problems we would have terminated. Luckily all was fine.

What I am trying to say is. I understand totally where you are coming from with three children already, this is how we felt to. But, like you said, in my mind I was thinking if there is a problem i could cope. But in reality, like you, we know that it is not always possible.

Dont give up on your dream. Try for further genetic testing before ruling out another baby. I really do feel for you and your dh. I am 13weeks pregnant now and besides a few very close friends and family nobody knows. Not even our three children. I am still so scared.

I also know loss as I have had two miscarriages and I know I will worry the whole nine months of pregnancy.

Life is so cruel. I am sending you lots of love, hugs and comfort to you and dh. Be kind and warm to each other, hold each other and be sad together when needed.

Will be thinking of you.

cba x

pagwatch · 30/03/2009 20:34

I don't think anyone has said she took this lightly have they? Really?

I do think though that parents of children with disabilities sometimes wonder if they have insight that may be useful. I don't think it is meant insensitively. I have been asked before by pregnant mums about the reality of living with a child with issues. I am happy to talk about my son without ever feeling any judgement about what any other mother chooses to do.
I think 'shame on you is' quite an over reaction in what I think has been a supportive thread.

cba · 30/03/2009 20:34

I second suzy.

Busier, hold your head high, you have a huge heart and much love, spirit and warmth for everyone.

pelvicflawed · 30/03/2009 20:34

Busierbee - have been away for a few days and just wanted to say hi - I'm sorry things haven't worked out differently for you. There isn't much I feel I can say to help just wanted you to know that having been there once myself I'm thinking of you and hope you feel some peace soon. My thoughts are with you.

expatinscotland · 30/03/2009 20:53

Sorry, busierbee.

I agree about seeing a genetic counsellor.

Perhaps, too, egg donation might be an option for you.

Wishing you peace.

busierbee · 30/03/2009 20:57

Okay - am pleased for everyone to share my thoughts and feelings and so many of you have been supportive and as i have written already - I respect that some people are reaching out to represent the other side of the options. Have said already though that have made decision -we have been here before remember. I am raw and struggling and this debate and that seems to be emerging is not about me but about everyone and am finding it a bit too brutal now. It is easy to see one or two dimensions to a person when reading these posts but we are real people, with experience of many things and yes of people with downs. I have respect and love for all families. And yes the baby does have heart defects too. I guess I feel I need support and not attempts to be swayed when have made my decision. Can you see this in the thread? Maybe not. Maybe it is too stark a way of communicating.Am just too fragile to deal with it right now - although am sure it comes from a good place in people's hearts. But boy thank you those who have reached out to support me. It was always a worry to write about it in the first place - I guess it is why not many people do. I wonder - would i ever ask someone who had decided to keep a baby with problems - whether they had considered termination as an option?
Nanbred- i pray that things may work out - hormone levels do fluctuate. You poor thing to have more turmmoil. There is no ceiling on pain and i do not think my sadness is bigger than yours. You are feeling the loss of the last baby and the fear of the future and all is painful. I wish you well. I truly do and please please keep in touch and reach out. It is comforting to be there for others.
BBx

OP posts:
HumphreyCobbler · 30/03/2009 21:05

Busierbee we are here for you.
I hope you find yourself able to continue posting.
Having been through a similar situation myself I wish I could find better words to comfort you but I seem to be tongue tied. Please look after yourself. I am thinking of you xxx

linspins · 30/03/2009 21:09

Busier Bee - from me to you (((((()))))) hugs xxxxxxxxx more hugs. I'm having another cry myself right now. Listening to Sigur Ros and wishing things were different.
Hold on to the good stuff, and keep that chink of hope for the future. xxxxxxxx Lins xx

ilovemydogandMrObama · 30/03/2009 21:21

My sister had a mosiac of Edwards and died when she was 6 years old.

I remember asking my mother whether she would have had chromosomal tests done had they been available, and she said that she would have liked to have had the information.

I've read your thread, and if I've missed it then apologies, but has anyone suggested what the percentage would be for this happening again? Obviously you need to mourn this baby and recover as far as the grief process goes...

Loving Treedelivery's suggestion of staying warm; both inside and out.

ickletickle · 30/03/2009 21:24

my heart goes out to you. so sorry some of the posters havent given you the respect and compassion that you both need and deserve.

the pain you must be feeling is just unimaginable. i hope there are happier times ahead for you.

i think you have given us all the jolt we sometimes need to remember how truly lucky we are.

god bless.

expatinscotland · 30/03/2009 21:28

Oh, ilovemydog, I'm so sorry to read that.

Yes, I think it was cba who made the wise suggestion of seeing a genetic counsellor, who can definitely help with that end of things.

treedelivery · 30/03/2009 21:30

Dear BusierBee - don't worry, come to the thread when you can. I'm sure there will be no more attempts to 'go there'.I think it was genuinely well intentioned but as you are experiencing, its just too too much. Everything is too much right now.

We will keep the thread about you and about your feelings on the day you post, and avoid it turning into a 'should you shouldn't you'debate. Anyone who feels they need that debate has other threads to do it on,where individuals with experiece of both sides can volunteer their experience. Mumsnet is great for that.

But here, this is BusierBee's thread and I'm sure we can all keep it exactly how you need ot to be out of respect for your suffering.

How are you tonight? Any news of the hospital appointment? Do your children know of these trials?

treedelivery · 30/03/2009 21:32

My spelling

I'm probably going to be an egg donor for a friend of a friend. Dunno why I mention it really, but they are in a black place. Hopefully a bit of sacrifice of time and egg from me and they will get their hearts desire. If thats what they choose to do.

ilovemydogandMrObama · 30/03/2009 21:41

Oh, sorry. I didn't mean to be unsupportive. I just meant no judgements and it's better to have the information and make a decision based on all the information available. So sorry if I've offended you.

Hope is a tremendous healer, and the genetic counselling idea sounds worthwhile.

busierbee · 30/03/2009 21:44

Well thank you sweet souls. MY head is throbbing with the conflicting emotions in my head. We are seeing the consultant tomo about genetic counselling. Tree what a generous woman you are- I am not surprised to hear you are donating. You donate kindness all the time on here. You are right of course everyone has a right to debate their opinions - i do believe that - i just am not robust enough for that right now.Thank you ickle and ilovemydog and humph for your support and honesty. And cba - so glad all well with number4 - good news and expat and pelvic too. It is all just a part of life to be dealt with and i think we are all doing our best and what is so touching, very touching, is the astonishing ability to reach out when in pain. And really I know that the people who are representing the other side are acting out of love too. It's just not helping me right now - but I am not sure anymore - if it is in public arena then i have to be strong enough to take it. Problem is.. I am not.
Warm thoughts to you all BBx

OP posts:
treedelivery · 30/03/2009 21:47

I think your post was really supportive ilovemydog. It only matters what busierbee thinks but I believe hearing of other's troubles does make things a bit more bearable. Especially when its across a generation iyswim?

These troubles are timeless, they effect women and families across the globe and across the years and they are always with us. I'm very sentimental about birthing I suppose, it's the great thing we all have in common. Everyone has a story. Some just break your heart.

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