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Original poster

Received Amnio result - Baby has downs

34 replies

jools70 · 19/07/2010 20:44

We are devastated, just found out this afternoon that the test results came back positive for Downs Syndrome. We are considering a termination even though we had IVF and I am 39.

OP posts:
innerstrength · 19/07/2010 20:52

Oh jools, I am so so so sorry. Have the hospital given you much support? How many weeks are you?

innerstrength · 19/07/2010 20:55

Is this your first pregnancy Jools?

hellymelly · 19/07/2010 21:11

I am sorry you've had this news,but don't rush into a decision on a termination.I don't think downs is as terrible as it can be portrayed,you can still mother your child,give him or her a happy and fulfilled life,all the things you would hope to give any child.I had my babies in my forties so I knew downs was a risk,my dds do not have downs,but I really searched my heart when deciding whether to have amnio or not (I didn't)and I came to the conclusion that I was really afraid of the unknown with downs and of having a baby that other people would think undesirable,and of the stigma of a child with a disability.When I came to terms with these feelings they seemed less significant compared with the love I knew I had for my baby already,I trusted that I would love her whatever.In your position I would talk to the Downs syndrome assoc and see if you can have a chat with a parent of a child with Downs before you make a final decision.You may still feel you want to end the pregnancy,and that is your private choice,but at 39 I really really recommend that you give yourself absolutely enough time to make sure you do what is truly the right thing for you,rather than something based on the understandable shock and panic you must be feeling now.
There is also adoption as an option if you don't want to end the preganancy but you feel unable to cope with a downs child.
again,I am sorry you have had this news.

PiratePrincess · 19/07/2010 21:16

Thinking of you. xx

innerstrength · 19/07/2010 21:56

Just realised Jools you have started another thread on this in the pregnancy section. Will post more there later.

LittlePoot · 19/07/2010 22:41

Oh Jools - I'm so sorry to hear you're having such a hard time. Such a lot to take in today, and you'll get so many opinions on all sides from people on here. Take one step at a time and be gentle on yourselves as you come to a decision.

There are many (too many) women around here who have decided to terminate for Downs (like me) or another chromosomal or developmental issue. The 'support' threads in particular will put you in touch with many of them if you want to read through the stories (we're on about number 5 now). Out here in the main board, there will be a mix of people who have and haven't terminated, and several parents of Downs children who can offer a really useful perspective if you want to consider continuing. Personally, there were too many reasons against carrying on for me and I'm pretty sure I'd make exactly the same decision if it happened again. Its not right for everyone, but I don't regret the termination at all - just the extra chromosome that got me there.

You might have already had the advice to speak to ARC from your other thread (here). Its staffed by women who've been through all this testing and crap results malarkey and has been a massive support to people in our situation.

Its a shitty situation for you, and it's a decision no-one should ever have to take. You can't know what you'd do until you get here, so try to ignore any 'well meaning' advice from those who frankly know very little. There are wise voices in here who can help or offer a virtual hand to hold whatever you decide and as you move forward - if you want. Take care. xx

busierbee · 19/07/2010 23:28

Dearest Jools
Poor girl; you are in such shock and the pain and upset is very real in your voice. To go through IVF, to lose one baby already.. well it is so very unfair.
Just try and let the feelings wash through you; all of them. The fear, the anger, the sorrow. And try and talk if you can to your DH.
When this happened to me; well, my world fell apart. I did not have any online support as I do now, I did not know about ARC, I did not have a midwife to talk to. But I wish so much I had. I talked to the most important person in all this. The man I love.
We wept, and held each other and talked about it all. We imagined our lives with a child with DS. We imagined being old, dying maybe whilst our child was still so needy. We heartbreakingly decided to terminate. This does not make you a monster. It is hard and painful and breaks you up but it is a decision. And decisions are available. As is the decision to keep your baby and parent a child with special needs. We could have done that, and we chose not to.
There are many women here who have done the same.. they are kind, supportive and non-judgemental. They will be here for you one hundred percent.
There are also women who have chosen to continue with the pregnancy; I think there is a link for you isn't there on the pregnancy section? I would read it. And give yourselves some time to absorb this shocking news. You will get through it.
Rest and cry and talk and rest and just get through the hours.
Thinking of you
Bee xxx

busierbee · 19/07/2010 23:47

And if you need to talk at all, about anything.. please do post. You set the mood - it is your moment, your pain. We are here for you. Not to share our judgement; just to hold you hand.
Take care of yourself Jools
Bee xxx

Scrumdiddlyumptious · 20/07/2010 08:11

Jools

So very sorry to hear your news. Our second baby (well techically third as had previously had an ecoptic pregnancy)was diagnosed with DS following a CVS and I know all too well the horror of finding out the news and deciding what to do. Regardless of your decision you are currently trying to absorb the information and mourn the child that you 'thought' you would have, and then decide whether to continue the pregnancy or not. That is such a lot to process and on the back of a long journey no doubt then ended in IVF it seems doubly unfair. As some of the wise ladies on here have said you really have to look into your hearts and go with your gut feel as to what you feel seems right. If you decide to continue the pregnancy, I know that there are a number of mothers of children with DS on this and the special needs threads that will support you and let you know all about the changes in raising a child with DS in this day and age - its has moved on from when we were younger - although of course many challenges still remain. Similarly if you decide to end the pregnancy - which was our ultimate decision - then there are lots of people on the support threads here that have been - and are still - going through it who will support you without judgement. I wish you well in your decision Jools. It has only been a couple of months since we had to make the decision and I feel so very much for anyone else in the same position. Good luck xx

adriennemole · 20/07/2010 11:01

Jools,

So sorry you've been given this news. I too can remember clearly the feeling of devastation and the anguish of making decisions I thought I would never have to make when our amnio results came back.

My baby too was diagnosed with DS something I had little knowledge of however I wanted to know more and over the days that followed threw myself in to finding out as much info as possible. My hospital were great I was able to speak to a paediatrician who had knowledge of downs and I sat and asked him question after question until we felt ready to make the decision to continue our pregnancy.

My DS is now almost 2 and is the biggest joy in our lives. His arrival has bought our family closer together and while it hasn't always been plain sailing I wouldn't change a thing.
Our day to day life is pretty much like anyone elses. I have gone back to work, life has gone on my baby has even learnt to walk this week and as far as babies and toddlers go he is very easy, easiest out my 3 by far. Things are good.

I would urge you to take your time and gather as much information as you can. I do however respect your choice to do whatever feels right for you. There is also a wealth of knowledge on here from ladies who have walked different paths and whatever you decide you will have so much support.

take care

busierbee · 20/07/2010 17:43

Dear Jools
Thinking about you,checking up on you and hoping that the midwife offered some comfort and kindness.
We none of us are here to judge you but to offer support. There seem to be so many women here who know about both ends of the decision that you are faced with.
Hold on tight to your DH.
Bee xxx

coventgarden · 20/07/2010 17:46

Jools - sorry if I am out of line, I have read your other thread and I get the feeling you would prefer to terminate and just want someone to say that is fine; and you shouldn't feel more pressure to keep this baby due to having lost a baby and gone through IVF.

DuelingFanjo · 21/07/2010 08:43

I did answer in your other thread but wanted to echo what Coventgarden has said. I am 40 and am pregnant through IVF. We had the Amnio and had the baby had downs Syndrome we would have terminated despite the fact that we hd IVF to get pregnant. It is such a difficult and hartbreaking decision but for us it would have been the right one.

thinking of you.

Original poster
jools70 · 21/07/2010 13:20

Met with the midwife and consultant yesterday and was told that it is too late to have a normal termination and that I have to go through labour, that was an awful shock.
We spoke about DS and we think that the best choice even though a very difficult one is to have a termination, we are due to go in tomorrow.
The whole process scares me to death but I know that we are making the right decision for us.

OP posts:
busierbee · 21/07/2010 14:10

Oh honey. Please know that you will deal with this in time, although right now you must feel that your world has been turned upside down.
I have heard the stories of many women who have gone into labour as you are going to. Both my terminations were surgical and I too was so terrified of labour. Something has shifted in my thoughts on this; as nightmarish as the whole experience is.. I think maybe, just maybe, the women who have given birth have a more appropriate experience. In time, some of the women who have posted on a nearby thread have been able to hold onto their memories of giving birth as something personal, real and realisable. The grieving possibly is more appropriate to the feelings of loss. Who knows? In the end, you are grieving for the loss of the baby you thought you would have.
There are so many feelings and thoughts to process. Be gentle with yourself. It is momentous and confusing and tough.
If you need to talk, please, please do feel that you can.
I know there are women who can help you to begin to express and process the agonising experience.

If you are a 'reader', if it helps you to read; there are some threads in the archive here that really take you through the journey. Support thread for women who have chosen to terminate 1,11,111, 1V etc.
Take care Jools and reach out if it helps you.
Bee xxx

Dropdeadfred · 21/07/2010 14:20

my friend has a dd with downs syndrome - she atends mainstream school, reads and writes and is absoloutely gorgeous - i'm sorry for the shock you have had, but dont make any snap decisions until you have all the facts. Plenty of children with downs are happy, cheeky well-loved members lof the family

RedArsedBaboon · 21/07/2010 14:24

I am so sorry to read this. I wish you well, in whatever decision you make. Take care xxx

oliviacrumble · 21/07/2010 14:25

I'm so sorry for your pain and the loss of all your dreams.

I'm sure you're making the right decision for you and your DH.

I hope and pray there are happier days ahead for you both.

coventgarden · 21/07/2010 14:26

Jools - I did think this was going to be your decision and can I just say I think you are very brave to post about your decision. I hope things go as well as they can for you.

Have you given ever thought to trying again? Would it change things if you weren't able to try for/conceive another baby?

DuelingFanjo · 21/07/2010 14:53

I am so sorry to hear that you will have to go through labour. it sounds very much like you have made the best decision for you and I will be thinking of you.

shangrila · 21/07/2010 22:49

Hello Jools. I'm so sorry to read that you are having to deal with this agony. Like many here, I've been through this too and my heart really goes out to you.

Wishing you strength in the days to come. We're always here.

busierbee · 22/07/2010 10:11

Thinking of you today Jools
Bee xxx

AbiAbi · 22/07/2010 12:17

Jools I just wanted to send you my very best wishes for today. It was an impossibly hard decision to make, and I'm so sorry this happened to you and your family.

Please take whatever lifelines are offered to you over the next few days, be it counselling, a few days away, or even just talking to us here.

Abi

Coffeeandchocolate · 22/07/2010 12:50

Jools, I am so sorry. I have been through a termination for abnormalities in February, at 22 weeks, and as Bee said the support threads on this board have pulled me through. I was terrified of labour, but in a strange way it was not a negative experience. It was, of course, immensely sad, but not traumatising.

My heart goes out to you. I hope you are well looked after. Just allow yourself to feel whatever you need to feel, and don't hesitate to come in here if it helps you. You are not alone, there are so many of us in here who took this agonising decision, and there is always someone to listen.

Please be gentle with yourself - this is often said in here, but it is so true, it is the only way you can get through this. Day by day... xxxx

waffydaffy · 22/07/2010 13:14

Think of you today Jools, I, like a lot of lovely ladies here have been through the same mind numbing experience.
We also decided back in January it was right for us but that doesn't ease the pain.
I have found this site a god-send. I don't post very often, but do 'pop in', and I go away feeling a bit better, I hope you will find it the same.
All our thoughts are with you