just had a confirmation for downs syndrome

(78 Posts)
fire77 Wed 22-Aug-12 04:23:26

Dear all
i just wanted some advice or maybe just for someone to listen and not judge. Having been for a CVS after being given a greater then 1:2 odds for T21 i had this confirmed this afternoon. This is my first pregnancy and i am 34 (35 in dec). I feel numb and tortured because i know i am going to go ahead with a termination of a very much wanted child but only because i dont feel strong enough to cope with a child with downs syndrome. To say i feel wretched is an understatement. My thoughts flit from one minute thinking its the right thing to do to then thinking i have been blessed with a much wanted pregnancy only to terminate it because this baby isnt good enough. In my heart of hearts i know i am doing the right thing but i am struggling to cope. I feel at almost 35 i will be much older and the likelihood of having another child after this that is healthy and not affected with T21 is higher. I am also scared of going through a termination ( i am 14 weeks and thought the CVS was bad enough).
Please could anyone out there offer me any advice or comfort as i feel i have no one to talk to?

onemoreforgoodmeasure Wed 22-Aug-12 04:38:11

I didn't want to read and run as my heart goes out to you but I don't have any experience of this. I think I would make the same decision in your shoes, hopefully there will be someone on in the morning who can pick up your thread.

Fuchzia Wed 22-Aug-12 05:27:39

This must be terrible for you. I can't offer you any advice, just my best wishes.

ColouringIn Wed 22-Aug-12 06:52:50

Oh I am so sorry to read this.

Have you spoken to ARC (Antenatal Resukts and Choices) as I know they run a helpline service you could use. So many women have been through what you are going through now.

This is obviously a much wanted baby and only you can know if termination is right for you. If you were 24 it might be easier to think "I can continue with this pregnancy as I am young and can cope long term", as we get older that becomes less and less certain. I know that at 24 I would have continued with a pregnancy but that at 37 I would not have done because of the long term commitment and less certainty that I would be around or in good enough health to manage.

Has anyone spoken to you about the procedure?

I used to be a midwife and cared for several women in your situation but am aware that procedures change and it might be all different now so don't want to say anything about the process in case I am wrong.

All I can say is that you should be well supported and be given pain relief as needed. Look up ARC and see what they have to say.

I am so sorry you are having to go through this.

While I know I would make the same decision in your shoes it just isn't as easy to do is it. I'm so sorry this has happened for you. I really hope you go on to a lovely healthy pregnancy next time.

Good luck

ColouringIn Wed 22-Aug-12 06:58:10

And be clear, this is not about your muh wanted baby not being "good enough", this is about you looking at the future for this child and making a decision about whether that future is likely to be a happy or difficult one. In doing this you are taking into account everything including your age now.

And you would have to be very unlucky to conceive a second baby with T21, it is just unfortunate this time. Obviously as we get older the risk of T21 increases but the odds are still very much that any future baby WON'T have the same chromosomal anomaly.

Pizdets Wed 22-Aug-12 07:17:54

Hi fire,

So sorry to hear your news. It's the most awful shock and something which is so hard to get your head around.

Please feel free to come join us on the 'termination for medical reasons' thread and get some support there.

I terminated my first pregnancy last Thursday at 17+6 after 5 agonising weeks (placenta in wrong place for CVS, amnio rapid results came back clear nd we were told everything would probably be fine, then full results showed an extremely rare deletion). I called ARC and got some really great advice and support from them so second that.

I don't really know what to say or how to help, but there are others going through this and I do know exactly how you feel. If it's any help, this last week has been unbelievably tough but I so far I don't regret my decision.

There are also some wonderful ladies on here who have the benefit of a little time since they went through all this and hearing their experiences really help.

My heart goes out to you and I hope you can make a decision you're comfortable with. Do you have support from your dh and family? Another thing that comforted me was speaking to the genetic councellor about what most other people do in my situation, it made me feel more 'normal'. Having said that, if you search through on here you can find people who kept their babies after a t21 diagnosis and are very happy.

Sorry, bit of a rant and not sure I helped much. Fingers crossed for you that you find a decision you're at peace with. Come talk to us if you do decide to terminate and have any questions or want to rant.

Piz

mummytoh1 Wed 22-Aug-12 09:33:40

My heart really goes out to you. I had a 1:15 result in 2010 and had the outcome of the CVS been different, I would have been making the same heartbreaking choice as you. I also don't think it's that the 'baby isn't good enough', you are being very very hard on yourself, it's a far more complex decision that you are making. ((hugs))

I would also recommend Antenatal Results and Choices. They will be able to advise you on the termination side of things, and also hopefully help you emotionally.

My understanding is that your chance of a subsequent child having down syndrome will automatically be 1% for a future pregnancy. This is a very very small chance, and I'm aware of many stories of ladies in your position going on to have a chromosomally normal child afterwards.

Again, I really feel for you, and I'm sorry you are facing this. x

ajandjjmum Wed 22-Aug-12 09:36:36

Just to say how sad I feel for you having to make any decision - but you must do what you think is right for you. So sorry.

mrslurkalot Wed 22-Aug-12 09:46:59

I am so, so sorry that you are going through this. Like mummytoh1 I had a very high risk of both Downs and Edwards in my second pregnancy, and if the results were different I would have been faced with your impossibly hard decision.

I can't recommend ARC www.arc-uk.org highly enough. I found them to be extremely supportive, and they will be able to talk you through all your fears, and support you afterwards.

Please, please be kind to yourself xxx

katiecubs Wed 22-Aug-12 09:49:34

I'm so sorry you are having to go though this - have been through the same myself albeit with a differant chromosomal diagnosis.

You need to do what feels right for you, no one else. I just wanted to add that 91% of people with a downs diagnosis decide to terminate so if you go down that route you would be with the majority.

Having said that if you are unsure like Pizdets says have a search for people who have decided to continue with their pregnancies who may be able to advise and help you on the realities of bringing up a child with Downs. I'm sure there is a lady freshfruitsalad too who is in a similar position to yourself who is continuing on with her pregnancy - she might be able to help too.

Good luck with whatever you decide xx

KateSpade Wed 22-Aug-12 09:51:40

Message withdrawn at poster's request.

DuelingFanjo Wed 22-Aug-12 09:58:06

Katespade, this is really not the place for you to make comments like that, they are not helpful and this area is supposed to be a supportive one for people making difficult choices.
I am going to report your post to Mumsnet HQ and hopefully they will delete it and then this response.

KateSpade Wed 22-Aug-12 10:08:38

Message withdrawn at poster's request.

I have reported the post. This is an amazingly difficult and heartbreaking situation for the op and comments like that are clearly not helpful.

Please try and consider the whole picture before you post.

Op, I feel heart sorry for you.
I had a termination at 18 weeks, due to anencephaly. It was many years ago but it was a horrible thing to have to go through. There are lots of helpful people here, and good advice on who to talk to. I wish you all the best xx

missymoomoomee Wed 22-Aug-12 10:12:37

Kate how disgusting of you to say such a thing. Why say anything at all if you aren't going to be supportive. OP I knew before my last 2 pregnancies that I may have had to terminate due to a genetic illness, I was very fortunate I didn't have to but my heart absolutely goes out to you. I don't have any real advice to offer just my sympathies for having this horrible choice to make xx

kate I think you should read and consider the opening post before you reply again.

Pizdets Wed 22-Aug-12 10:23:51

katespade I have also reported your post. The OP has a tough decision to make and judgements like that are not helpful. Often people in this position don't just have to consider whether their child will be a 'pleasure to be around' but also to think about the quality of life for their child (ds is often associated with other severe heart and health problems), how it will affect their current and future family and also what will happen to a disabled adult when they (the parents) become old, infirm and unable to provide a high level of support. Please believe me when I say no one I've met or heard from in this position has undertaken the decision lightly, and most of the parents who kept their t21 babies are kind-hearted and supportive people who understand the trauma and upset of being in a position like this and would never rush to cast judgement on anyone else.

mummytoh1 Wed 22-Aug-12 10:37:48

I've reported katespade too, what a nasty thing to say, totally inappropriate.

KateSpade Wed 22-Aug-12 10:44:11

I know I shouldn't have said anything & i am sorry for the harsh words earlier. It is an emotive situation for me that's quite close to my heart. I know not only the Heath problems associated but to have a member of my family have the condition + other people I know. & while I don't agree with your decision I am truly sorry for what your going through & I hope everything works out in the end for you.

Northernlurkerisonholiday Wed 22-Aug-12 10:54:27

It's a pretty emotive situation for the OP too as I'm sure you now know. Maybe restrain yourself from posting next time?

realnappiesmum Wed 22-Aug-12 11:57:40

Hi just read this thread and what katiecubs and pizdets said about other women who have had prenatal diagnosis of down's and are continuing with pregnancy. We had 20 week scan which showed soft markers for down's which was then confirmed with amnio. We decided to continue with pregnancy and I am now 26+6 week. I think I am right in saying that wipsglitter and Eidsvold have children with down's syndrome if you want to search for them. Freshfruitsalad also like myself had prenatal diagnosis of down's and is continuing. I know this is a deeply emotive subject and a very very personal choice and no one should ever be judged on choice they make after receiving this news. From conversation with our consultant, things have improved dramatically over the years for children and adults with down's syndrome and many are able to lead independent lives. Age did not come into it when we made our decision to continue as I am 37 and my husband is 49. My heart goes out to you at this difficult time as I fully understand how it feels to receive this news.

fire77 Wed 22-Aug-12 13:37:58

I am so overwhelmed by the lovely messages of support I have been given just in the short time since I have posted. Thank you all for each and every kind non judgemental message I have been given. I understand that not everyone will agree with what I have said. Its a very sensitive and highly emotional situation to be in and naively I thought I would sail through with no problems. No one deserves to be going through this no matter what they may have done and I wouldn't wish this on my worst enemy.
Unfortunately the situation to me keeping my baby has been made more complicated by being told today that there appears to be a trisomy on chromosome 13 which is patau's syndrome so my babies quality of life would be compromised further. I couldn't do it to my little boy (they kindly told me it was a boy today) as I feel it is worse to possibly have to watch him go through pain or die before his first birthday. Please forgive me if I sound self indulgent as that really isn't the case as I love him so much and it is killing me to have to let him go. The hospital are arranging a surgical termination even though I will be 15 weeks by the time its done. I must say I am relieved. Although I love my baby I am scared to go through this again and put another little life at risk but I suppose genetic councilling will help.
Thank you all so much for listening to me in my time of need. I am so sorry to hear others have been through this and those that are telling their stories and being so strong well all I can say is you are an inspiration to me. I am so sorry for everyone that has been through this and I feel your pain. I am glad I am not alone and I can turn to you all for support. it is from this I will find the strength to go on.
Love to you all x

kilmuir Wed 22-Aug-12 13:44:54

op I hope you find the strength you need to get you through this awful time

ColouringIn Wed 22-Aug-12 13:46:37

You are not being self indulgent, you are making a very difficult decision based upon the quality of life your baby will have.

I hope everything goes as easily as possible for you.

Be kind to yourself (and your DH).
Allow yourselves time to grieve
Xxxx

missymoomoomee Wed 22-Aug-12 13:53:08

Fire my heart is breaking for you. Given this new information I really think you are doing the right thing for your little boy. My daughter (unknown to us) had a genetic condition, we didn't discover until she was born, she was in pain for her whole short life and we had to switch her life support off at 2 weeks and it was hideous. I know if I had the information sooner, as much as I adored my little girl, I would have had a termination to save her that pain and trauma. We had genetic counselling and its very helpful. I suggest taking a recording device and also making a list of every question that pops into your head beforehand as your mind will go blank when you are there . I am so so sorry that this is happening to you and my thoughts are with you xxx

23balloons Wed 22-Aug-12 13:54:49

My thoughts are with you. I hope the you can recover in time and conceive again. I know it is emotive but I would do the same as you and I too have a relative with ds and it has placed great pressure on everyone in the family.

brettgirl2 Wed 22-Aug-12 14:10:04

OP so sorry. Tbh the diagnosis of Patau stops it being a choice I think. Downs is an entirely different situation.

OhDoAdmitMrsDeVere Wed 22-Aug-12 14:24:38

Why hasnt that vile post been removed.

I am so sorry you ate facing this fire

Brett is right. Patau's is a very, very serious condition.

I don't know what to say to you other than I wish you didn't have to cope with this. Take care

realnappiesmum Wed 22-Aug-12 14:31:31

Fire77, I am so sorry to hear this news. My heart goes out to you.

missymoomoomee Wed 22-Aug-12 14:32:27

Ohdo I got a message after reporting to say that they agree its in very poor taste but they don't really delete posts on the grounds of being innappropriate and that they see she has apologised and hope in future she will be more mindful. IMO Kate should ask for it to be removed though especially as she has since said she admitted she shouldn't have said it.

draftingtowardsobscurity Wed 22-Aug-12 14:37:45

Whilst I agree that Kate could have worded her post in a slightly more sensitive manner, why should her post be removed? Because she disagrees? Because she isnt coming on here to say 'whatever you decide is the best decision'? Musnet, IME has been a place for candid and honest opinions, and this section of the forum should be no exception......

Sorry to hear of your news, whatever you decide is best for you.
But having a downsyndrome child in my family, beautiful little girl, lovely personality and such a lovely child to be around please really think before you decide for sure.
It will be a hard road ahead no matter which route you take.
Maybe you could find more about downs before you make a decision-most live relatively happy lifes aslong as their is no heart defects etc.

Bestwishes and hugs x

0lympia Wed 22-Aug-12 14:44:00

I hope you're not beating yourself up. ONe of my children has autism, and I have nothing but admiration for women who acknowledge their own limitations and human frailities. It is honest and it is not a criticism of anybody else's child. 35 is not old.

x

EightiesChick Wed 22-Aug-12 14:45:03

What a difficult situation to be in. Wishing you lots of strength to deal with it all.

newbie6 Wed 22-Aug-12 14:45:37

I just wanted to say my heart goes out to you and I think you are being exceptionally brave. I hope you are getting all the support you need and for what it is worth, irrespective of anyone's opinion, the ONLY opinion that matters is yours, you do what you feel is right as I truly believe your instincts don't let you down. No one knows you as much as you know yourself and what is important is that you love your baby and whether your wee boy has been with you for a short time or a long time, you will always know you loved him during that time and that is something to treasure forever xxx

Northernlurkerisonholiday Wed 22-Aug-12 14:48:11

Can I APPEAL for people in this case to READ THE WHOLE THREAD before giving their view.

Very sadly the OP has discovered that her baby has another, very serious, genetic problem. This thread isn't just about Downs Syndrome now - and even if it were I think that actually it's best to follow the OP's lead. If they ask for stories of what posters have seen in their own families and friends' families then fine. But otherwise it's probably best to keep those anecodotes out of the very painful and difficult decision the OP faces. She decides for her family and can't base that on what others have done. To push others stories only risks making this a harder place for her to be and that's not needed right now.

Well said Northernlurker, i realised to after re-reading that there is more serious complications with ops baby so im very sorry for anything i posted earlier as it is irrelevent and won't help op.

Hugs op, my thoughts are with you at this heartbreaking time xxx

Springhasarrived Wed 22-Aug-12 14:55:33

Fire, no advice, just wanted to say you sound very brave and seem to have properly thought it through.

I know I would make the same decision in your shoes as I had a baby at 36 and went through all the tests. It doesnt make it easy though.

Very good luck for the future x

rainonmyparade Wed 22-Aug-12 15:07:43

I would do exactly the same as you OP, in your situation. You are in my thoughts. x

DuelingFanjo Wed 22-Aug-12 15:25:35

Sorry to hear that you have had more bad news re the pregnancy and just to let you know that I would also do the same in your position. There is lots of support for you here.

I would suggest to anyone not wanting to support that choice but wanting to continue to discuss their opinion that they maybe post in ethical dilemmas which was set up for discussions like that.

draftingtowardsobscurity I would suggest that this section should be an exception and the link I have posted provides a place for you to be candid and honest without causing distress to those who are in the middle of making difficult decisions.

rhetorician Wed 22-Aug-12 15:33:51

northernlurker - you are so right; I was going to post one thing in relation to the original post, but having read the whole thread, it's not appropriate to the new situation, so I think all I can do is to offer my sympathies and to echo what others have said - it's a horrible time, and I feel for you OP.

I posted on here over a year ago and like this OP someone decided to make an unthought out and rather cruel comment; I agree that this is a good place to discuss things, but it's a question of tone and approach. However, I note the apology, but agree that poster should ask for that particular post to be deleted.

I would do exactly the same as fire faced with the same information.

OhDoAdmitMrsDeVere Wed 22-Aug-12 15:34:16

Well said northern and duelling

draftingtowardsobscurity Wed 22-Aug-12 15:39:37

Might I suggest mumsnet put some wording to that effect on the header of this section like aibu does?

draftingtowardsobscurity Wed 22-Aug-12 15:49:55

And Duelling, would you say this applies to all posts here? Even if the OP specifically asks for an opinion on ethics, I'm thinking eg a previous post where the thread title was 'thinking of a termination, is it ever right?'.

I think it should be made clear that the people posting here are in need of comfort and support, not judging or questioning.
These types of decisions are hell on earth, it's the last thing anyone needs to read.

HumphreyCobbler Wed 22-Aug-12 15:55:09

Hello. I terminated a much wanted baby due to Patau's syndrome. We found out at our 20 week scan. I am so sorry that you are having to go through this. If you have any questions please feel free to pm me.

DuelingFanjo Wed 22-Aug-12 15:59:50

"Even if the OP specifically asks for an opinion on ethics"

I think, if a poster starts a thread in this section about the ethics of abortion or ante-natal testing then it would be correct to move that thread into the ethical dilemma section.

If they were to ask a question about ethics on a thread where someone is asking for support re Testing or results then I think that's crass and unhelpful and has no place in a thread of that nature.

but I don't want to derail this thread by continuing to discuss it.

Very sorry to hear your news, patau sounds awful for baby and a question of termination would be easy, the outlook appears so bleak sad

Northernlurkerisonholiday Wed 22-Aug-12 18:46:02

I agree with your view Dueling. This section has been helpful in 'protecting' women facing very hard situations and it should be above all 'safe'.

fire I just wanted to say how sorry I am that you are going through this.

Trifle Wed 22-Aug-12 19:05:04

I fully support your decision and totally understand where you are coming from. I think you are making a very selfless decision. I dont have a child with Downs but had an amnio with both pregnancies and would have made the same decision as you.

I recently met a lady with a child with Downs. I thought she was amazingly strong and composed considering the child was also deaf. I was completely surprised when she broke down in tears and said she wished she could turn the clock back, that if she had known she would never have progressed with the pregnancy but of course, it's too late. Such honesty was a shock, the reality of dealing with a child with so many difficulties was overwhelming for her.

LookBehindYou Wed 22-Aug-12 19:10:50

I'm so sorry fire77. My thoughts are with you and your little son. So sad.

PrettyFlyForAWifi Wed 22-Aug-12 19:11:11

I'm so sorry that you have found yourself here Fire. I have walked along the same path as you (terminated at 22 weeks for cardiac problems) so I understand the anguish you feel now. There is a support forum at ARC which is a safe space for women who have had to interrupt their pregnancies, it is very supportive and there is obviously no risk of fuckwits who don't know what the hell they're talking about weighing in with their hurtful and irrelevant opinions. Sending much love your way for you and your little boy x x x

katiecubs Wed 22-Aug-12 19:25:53

Fire - sorry to hear you have had more bad news, but glad you have found it a little easier to make the decision. Will be thinking of you and your family, take care x

drjohnsonscat Wed 22-Aug-12 19:41:28

Fire I just wanted to post to say that I terminated at 16 weeks for the same reason. For me it wasn't even a 'decision'. It felt utterly clear to me and I didn't have to wrestle with my feelings over it. I just wanted to say that as I think sometimes we feel as though we don't have permission to be ok with our choice.

That's not to say I didn't feel desolate and despairing. I was the same age as you and felt I was blighted (I had Lready had 3 mcs). But I was wrong. My daughter was born less than a year later and I had my son at 40. My life has found its path and yours will too.

Wishing you courage.

fire77 Wed 22-Aug-12 20:32:48

I must say I feel so protected by you all. You have never met me yet are understanding the pain I feel and are so non judgemental.
Trifle what you said about meeting that mother who was honest enough to say she would do what I feel I have to if she could turn the clock back doesn't make me feel like such a monster and this is from a lady that loves her child very much.
Dr johnsoncat I am so sorry for the pain you have gone through. Reading what you went through made me feel so humbled but you have given me hope that I so badly wanted so thank you and I am so happy to hear you were finally blessed with happiness through your children. Strong women like you give me strength and I am in awe of how you continue fighting with such dignity.
Prettyfly I hope you are healing now what a horribly late stage to discover your baby is so ill. You are right people who are judgemental do not deserve our acknowledgment so I have tried to ignore any posts about how awful a person I am as I don't need it right now nor did I ask for it. Don't get me wrong it hurt to read but I guess I have to accept that my decision will anger a lot of people I just wish they chose another forum to vent their frustration about 'people like me'.I just consider myself a woman desperate to be a mother but selflessly protect my baby from any harm or pain and if that means letting him sleep as much as as I love him then that's the sacrifice I am willing to make even though this pain will live with me until I die.
Thank you all again so much for understanding and offering such amazing words of support in my desperate time of need. You have all restored my faith in the human race.
Hugs to all of you who have been through or are going through pain of any sort. My thoughts are with you all too x

drjohnsonscat Wed 22-Aug-12 21:38:03

Fire I'm glad some of this resonated. And glad you feel protected. Whatever you feel or want to say is ok. All I will say is that this terrible time for me is truly behind me now. It was so painful to go through but I had a future and you do too.

Thinking of you over the next few days x

KateSpade Wed 22-Aug-12 21:52:07

I really am sorry, i shouldn't judge anyone else's situation at all. No-one knows what anyone else is going through. I sound like an ass, but i am a nice, reasonable person usually.

My family member died a few years ago and I've recently found lots of his baby books with his name in, thats why i just went off on one.

No excuse though. sorry.

littleanimal Wed 22-Aug-12 22:40:38

I'm very sorry that you are going through this. Everyone will have different opinions on this, but I wanted to share my experience. I am 34 and my 31 year old brother has Down's syndrome. He is a lovely guy and has a very good quality of life. However my mum (who is 66) essentially still has to look after a child - he is totally dependent on her. She has to wash him, dress him, prepare his food etc. She has to get a babysitter if she goes out in the evening. As much as I love my brother, I don't think I could give up my life like she has. I think that given a choice, I would not continue with a Down's pregnancy. But obviously this is a deeply personal decision.

Yourefired Wed 22-Aug-12 22:50:02

No judgement here. You and your partner need to do what you feel is right for you. Sounds like you are informed of the implications and facts, and others have suggested places where more of this type of support available. Go easy on yourself, life is very hard sometimes.

yellowraincoat Wed 22-Aug-12 23:02:19

OP, I'm so sorry to read this. Absolutely no judgement from me and I hope you continue to get the support you need.

chipmonkey Thu 23-Aug-12 00:20:08

OP, so very sorry that this has happened to you. and with Patau's tbh it's basically not a decision to end the life of the baby, it's actually doing the kinder thing for the baby by ending his life before he has to face a world of discomfort and pain and then sadly die anyway. You did the right thing for your boy.

Kate I know you just blurted out what was in your head at the time and I have done the same, many a time on MN and regretted it so you're not alone in that!

There are lots of women on MN who have had a baby with DS and who love their children very much. And I have a cousin with a beautiful boy with DS. He is the light of her life. But he spent the first three years of his life in hospital, has had numerous heart operations, has never eaten any food orally, so has a tube inserted into his tummy in order to feed. She adores him and I honestly don't think SHE would make a different decision now if faced with the same choice again, nor would anyone in our family wish she had chosen differently but the sacrifices she has had to make have been huge. You honestly can't berate someone for making that choice as sadly, it isn't always just a case of being a lovely child with DS, they all are, but for all you know, they may be facing the same life as my cousin and I wouldn't blame anyone one whit if they thought that might be too much for them. My cousin is a wonderful devoted Mum but she has had very, very bad days with her boy.

I have an aunt also who lost her son aged 5 from complications from heart surgery which sadly a lot of children with DS will need. I have also lost a child and the pain of that is something I wouldn't wish on anyone. If you have a child with DS, you are much more likely to have that child die before you than if your child didn't have DS. Do you see that it's not as simple as you originally thought? And that it MUST be the choice of the couple or indeed the woman who is pregnant herself to make the choice about what she can and cannot take in her life?

I do think you sound like a lovely person and your recogniition that people with DS are human beings and deserving of love and respect is commendable but the Antenatal Tests/Choices topic can be an awful place for an OP to find themselves posting in so it's best to be mindful of that.

Fire77 I just wanted to say how sorry I am, and that I'm thinking of you. This is a horrible situation to have to go through, but the diagnosis of DS plus the added complications have, I think, made the decision for you.

I'm 35, have two children already (4yo, 8mo) and sadly had a TFMR last week at 18 weeks because of a diagnosis of DS after an initial risk factor of 1:2. It was a horrible decision to make, and one that I never thought I'd make if you'd have asked me hypothetically before this whole situation arose. But that's by the by. I would never judge anyone's decision. Everyone is different, and there are so many factors involved.

If you have any questions about what's going to happen, or simply need your hand held, don't hesitate to ask/talk about it. There are lots of lovely people here who have helped me over the last few weeks. It's so nice to know you're not alone, that others have been through what you're going through, and that there is - eventually - light at the end of the tunnel.

Thinking of you x

fire77 Thu 23-Aug-12 06:30:51

Drjohnsonscat i am going to hold onto your story and keep the hope that i still have a future and that hopefully i will go on to have another child god willing that is healthy so thankyou.
katespade thank you for your apology and i understand your judgement and that it wasnt meant with malicious intent. Sometimes it can be hard to put yourself in someone elses shoes unless you have been through it yourself no matter how strong your feelings are on a subject. You were at least gracious enough to see that in the end
littleanimal your story of your aunt is exactly what i didnt want and why because of my age and my understanding of my limitations is why i have decided not to continue with my pregnancy but its hard for people to accept that as a reason labelling the decision to terminate as selfish when its based on so much more than that so i take comfort that am not alone in feeling this.
chipmonkey thankyou for sharing your stories from your family of both sides, one of a parent with a child with DS who wouldnt change a thing and one that is my worst fear which would be to see my child in pain/suffering or worst still die before you. The problem i have is that Dr's cannot predict the severity of DS my child would get and i have to face the worse case scenario in my head not as a means of rationalising my decision but as a means of being realistic. This would not just impact on me but also my husband and my family and the thought of who would look after my boy if i or my husband died before him which is a very realistic concern due to my age just breaks my heart.
mummymonkey your story is heartbreakingly similar to mine. With the 1:2 odds i spent days scouring the internet for happy endings to such rubbish odds and desperately clung to those and ignored all the sad endings. I thought there is still a 50% chance he will be ok and prayed i wouldnt be the '1'. Looking back i think the shock and the denial that i would ever have to face a decision like i have was too much at the time. I am so glad you have 2 other children to help focus your mind. I hope one day i will be so blessed also. I take sanctity in knowing there will be light at the end of the tunnel and will take comfort from that and the fact that everyone on here have been so lovely with their words of comfort in such a dark time for me.
thankyou all who have stopped to read my situation and took the effort to send kind words to me. I know you didnt have to and the fact that there are such wonderful people out there gives me great comfort. x

Champneys Thu 23-Aug-12 06:39:39

OP - I am so sorry you are going through this nightmare. I really am and hope that you manage to get through it xxx

maples Thu 23-Aug-12 07:01:18

Dearest fire, I am so sorry to hear about your bad news of two genetic anomalies and the very difficult decision you have had to make.

I just wanted to post to let you know about the physical aspects. I had a missed mc but the pregnancy kept growing even though the baby had died. I had to have the surgical procedure at 13.5 weeks and was told then it was identical to the termination procedure. Physically I recovered very quickly. I was exactly the same age as you and was told by the Gynae that it is much easier to get pg after a first conception. I conceived again within 6 months and had DS.

Have the hospital told you why you need to wait to 15 weeks? Would there be a chance of an earlier procedure at another local hospital? I ask because I was also told I had to wait to 15 weeks but then switched to another hospital and got the op sooner.

Un MN hugs to you.

xx

fire77 Thu 23-Aug-12 07:56:20

champneys thank you i hope so too
maples i was 14 weeks and 2 days when i saw them yesterday. They initially said i had to have a medical termination as i was too far gone but after speaking to one of the top consultants he said he would agree to a surgical termination (which i was so relieved about as i have never experienced labour and didnt want the first time to be under these circumstances) but he cant do it until next week so i will be 15 weeks. I was assured that this surgeon is very experienced so the longterm risks to my cervix or future pregnancies is minimum or the doctor wouldnt have agreed to do it.
I am glad to hear it is easier to conceive after a first conception. I will wait to get the report from the genetic councillors in 6-8 weeks and if i am lucky enough to be told i or my OH are not carriers for any genetic conditions then i will try again as soon as my body will allow. I am sorry for what you went through but so happy to hear of your happy ending!

Fire77 - it sounds as if you haven't had a chance to have a proper chat with the medics. It is very unlikely that your baby would have both trisomy 21 and trisomy 13, I don't think the foetus would survive. (not impossible i guess but very unlikely). It seems most likely that the screening picked up an issue which has now been confirmed as trisomy 13.

Trisomy 13 and 21 are very very different. I really think for your own sake it would be worth getting someone to explain the results to you. I say this because, whilst it's no-one else's business, people who might find the idea of termination for trisomy 21 difficult for themselves would often terminate for trisomy 13 where the chance of survival is so low and the associated disabilities so severe. Although not strictly accurate trisomy 13 is often described as incompatible with life and so is often seen as a situation where there isn't really a choice. In other words if your baby has trisomy 13 you are likely to get universal support. It may be more helpful to you to feel as if there is no choice as well

Good luck.

Whoops only saw the first page - so suggestions a bit tardy. Anyhow good luck.

JaffaSnaffle Thu 23-Aug-12 08:37:47

Fire, I am so sorry you are going through this. I am pregnant now, and at 13 weeks I was told I had 1 in 20 chance of Downs. We decided to have Cvs and it came back clear. That week was one of the darkest in my whole life. The choices you are making are so very tough and very sad. I was completely conflicted over what to do with a Downs diagnosis, because I knew that some people with Downs live good lives, (but some have severe health problems). But Patau makes things very clear IMO. I am so sorry you have to go through this, it is so hard. I never thought it would be me that had to get into all of this, and I am very aware that I only had to go through it for a week. Try and get as much support as you can and be very gentle on yourself afterwards.

maples Thu 23-Aug-12 09:27:14

Fire that sounds very good - my op was also done by a senior consultant and I am sure it was one of the reasons that the physical recovery was so smooth.

drjohnsonscat Thu 23-Aug-12 10:50:50

fire you do not have to labour. I didn't - at 16+ weeks. I went to Marie Stopes and it was as ok as these things ever could be. My GP initially told me I would have to labour and that was almost the worst thing about it - the idea of going through labour at such a time. It was rubbish and I feel quite angry that I wasn't given all the options.

NattyCraig Thu 23-Aug-12 15:59:45

I think I would do the same thing as you, as much as you may want to be a mother if you know you would struggle to cope and therefore the happiness of yourself and child would be compromised then do whats right for you.

Good luck and good luck for the future

xxxx

Secondsop Fri 24-Aug-12 23:17:27

Fire77 I don't have any insight or experience to bring but I just wanted to say that my heart goes out to you at what must be such a hard time. It sounds to me that you are being incredibly brave and I really do wish you all the best.

Adviceinscotland Mon 27-Aug-12 14:17:05

Fire77- I went through the same thing as you last December, I was also 14 weeks.

I won't lie, it's the toughest thing I have gone through and I hope you have some good support around you.

I did have to go through the delivery of the baby but it was really not as bad as expected (thanks to a great midwife)

Have not read the full thread (still find it very painful) but have you been given any choices about having a service for the baby once he/she is born?

I found that really helped me and I keep the babies ashes beside my bed, we may have chose to end the pregnancy but the baby will always be part of my life.

Pm me if you want to ask anything or need someone to talk to

X

hiphoppotamus Tue 28-Aug-12 21:07:38

Fire77 I'm so sorry your going thorough this terrible experience. I had a termination after my ds1 was diagnosed with patau's at my 20 week scan. It was a heartbreaking decision but the right one. I found arc very helpful and had a few months of counselling to. Please take care of yourself it's such a hard thing to go thorough. Just to end on a positive note I now have a healthy 2 year old ds

HeartOfDixie Sat 01-Sep-12 20:06:26

Hello. Adding to this thread a bit later on than the others, so apologies for that. I had the same diagnosis on my second child about four years ago, Downs and Patau. I had very similar feelings as you but knew always as a deep level it was the right descision for me and my family. At the time my DD was 4.

I had the support of a fantastic midwife who helped me through the times, from making my descision to checking in on my after I had the termination. I was 14 weeks and had an induction. if you want more details about that than pm me.

it was hard afterwards, I can't sugar coat that. I had to grieve for the child I was never going to had, to meet and so on. but with the support of my close friends and allowing myself to grieve I got through it. I did feel guilty but soon realised for me the termination was ok and the feeling that it was right for me never left and got me through it.

at my hospital we had the option of the baby being buried / cremated and I attended the service at the crematorium. I'm not religious but the service really helped me as I got to say goodbye. I went alone as I did feel as I was carrying the child it was more my story, event, time to grieve than my DH. this service really really helped and I would strongly advice you doing something of the same nature, write a letter, let a ballon go free or simply look at the sky and say what you need to.

for me, but of course everyone is different, I thought about my baby that I never had (this is what I call him/her in my head - I didnot want to know the sex) everyday nearly for a year, it became easier and less painful and more wistful. 4 years on I still think about him/her but only when I am reminded or come across my scan pictures etc. I will add that I may think more about it than others as I was unable to have any more children due to fertility issues with my DH.

apologies for the lengthy post and the loss of capital letters. in essence, my inner voice that told me it was right for me meant I could have the termination and deal with the resulting emotions. It sounds like you have that too, so listen to yourself as you know best.

take care of yourself and feel free to pm message me, always happy to talk and more importantly, listen.

lots of love

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