Just had amnio result - would welcome some support

[dreamingoflamu]

hello all
Sorry to bring a sad thread to the pregnancy board. Last week at our 20 wk scan our lives changed completely when we were told our babe had a serious heart condition (AVSD), we then saw specialists who confirmed this and found several soft markers for downs also.
Had an amnio last Tuesday and after the most hideous wait I have just been told that I am carrying a downs baby. I feel calmly numb at the moment - but there have been lots of tears over the last few days. We have a huge decision ahead of us, one I wish I could make go away.
I've done lots of reading, contacted support groups and have read archived MN threads which have really helped. But I could really do with some words of support, I'm so scared no matter which route we take.
we have a 17 month old ds who is keeping us sane and even smiling, but would really welcome some wise mn words
thanks

Oh Hun, I have no constructive advice at all I'm sorry I just couldn't ignore this thread. I can't possibly imaging what you and your Dh are going through at the moment. Thoughts and prayers with you though xxxxxx

Message withdrawn

Dreamingoflamu. All my thoughts and love are with you. What a desperate situation for you all.
Only you and DH can decide which way to go but whichever choice you make will be so hard for you.
We'll all be here with you every step of the way.

really sorry to hear about your amnio results.
i havent got any advice for you,i just wanted to say hi and i hope that you get the advice your looking for.xx

Sorry to hear you're faced with this dreaming.

Bumping for you. Hope that Eidsvold or Thomcat might see this as they both have experience of having babies with downs syndrome. Good luck whatever decision you make.

Hello there, and I'm sorry things seem so frightening just now.

I have not been in your situation, but I have a friend with a 13-month-old with Down's. He was also born with a serious intestinal condition, had two operations, was critical for a while and spent his first three months in hospital. He is LOVELY. Of course he has health problems and is developmentally about the stage of an 8-month-old, and has many challenges ahead, but he is smily, communicative, curious and my (NT) 16-month-old loves him - as we all do.

The family have an older dd too, and it is a tough struggle sometimes, but I know they would NOT be without him.

The decision in the end is yours, but I did want to share this with you, so that you know it doesn't have to be all doom and gloom.

There are a few MNers with children with Down's. I hope one of them comes along soon and can offer you more advice.

so sorry, what awful news. I have no advice, just to let you know that having a downs child is not the end of the world. Thomcat and Lottie bear witness to this.

Hi Dreamingoflamu

Just wanted to say - my heart goes out to you. Very difficult decision. When I was pregnant with my DD I had to be tested for Down's as my cousin had a DS when she was 19 who was a Down's baby. She had had all the tests and they came back negative but the day after she gave birth they told her he had Down's. That baby has just turned 10 last week and he is the most gorgeous, affectionate (sp?) little boy you could ever meet and no one would change him for the world . I think my cousin found it hard when he was a baby as he had a hole in his heart but he is absoltely fine now. HTH and good luck to you whatever decision you make.

I can't help you with regards to the Downs,but my dd4 has a serious heart condition (diagnosed at 12 days old). I have found Heartline very supportive and they include help for pregnant mums. Hugs to you and strength to deal with whatever you decide.

well just reading this thread it has brought a tear to my eye i always think off what i would do if this happend to me as i have worked with downs i know what hard work is needed but just like any child. no matter what road you take the most you need is support i hope you find the strength you need to get through this

Dreamingoflamu - I can't imagine how you must be feeling. Have the hospital offered you any counselling? They probably did a bit before the amnio, did they?

If you want to research children with heart conditions, the CHF - Children's heart federation - run a helplline, and also have a special suport group for 'Down's Heart' parentys / babies. here

Wishing you strength, whatever you decide.

dreamingoflamu -- my heart goes out to you. Life just turns upside down doesn't it? Our DS2 was also diagnosed with severe conditions at an early 18wk scan. Hardest time of my life. He was only given a less than 1% chance to make it full term.

I found ARC
Antenatal Results and Choices website a wonderful place. They can put you in touch with people in the same situation, support groups, helpline, etc. They are a charity to help you with what ever choice you make.

If you'd like to chat, please let me know. You are not alone. Whatever you decide, you will be strong enough to handle it.

My DD was a godsend during this time.

BTW have gone on to have another lovely little boy -- now 2.

to Quote them"
As parents of a baby with an abnormality, you may feel very alone. You may think you are unusual and that no-one can possibly understand how you feel. You, and everyone around you has assumed that your baby would be normal. When you are told your baby has an abnormality, you lose the healthy baby of your dreams and your belief in yourself. It is quite natural for you to wonder if it could have been avoided. You might try to blame yourselves or even each other; you might feel that you or the hospital staff could have done something to prevent it happening. In fact, almost always there is no connection between what you think you did (or didn?t do) and what has happened.

When you first hear the news, it is likely that you will have a mixture of very confusing emotions. There will be sadness at the loss of the normal baby you had hoped for, as well as sadness for the baby you are carrying. In order to make your decision about whether to continue with or end the pregnancy, do not be afraid to ask all the questions that are on your mind; it may help you to write them down. Many people want to know as much as possible about what is wrong with their baby. Sometimes it may be a well recognised condition with a lot of information available, while at other times very little will be known. You may have to ask to speak to a geneticist or paediatrician to get some of the answers you want or perhaps go directly to the specific disability organisation. Ask for time if you need it; it may be important to you in the future to know that when you made your decisions, you had all the information you needed."

Hi dreamingoflamu. I am sorry you are having a tough time - it must have been a shock for you to hear the news. I just wanted to say that I have experience of working with a couple of children who have downs syndrome and while they have their challenges they can still enjoy a relatively 'normal' life in most cases. One of the girls is now 17 and going to college - she is a real tomboy and loves football but got all dressed up to attend a formal ball at school with all the other 'NT' girls. She is a wonderful girl and has many friends and another girl who I was at school with does a lot of volunteering - she works ion a local charity shop and knows everyone. When she is not working she is out for coffee with one of her many friends! Please be assured that it is not neccesarily all doom and gloom and although there will be challenges along the way there will also be a lot of joy. I do realise though that it is a decision for you and dp to make - I just wanted to let you know about the wonderful girls I know.

dreamingoflamu I'm so sorry to hear your news. Thinking of you xx

thanks all of you for yur kind words, and thanks USAUKmum for that quote and your experience. I have been in touch with ARK but intend to call them again today now I have the result, I had hoped there leaflets would have arrived in the post by now but nothing - wish the hospital could have given them to us last week. We are getting an appointment tomorrow with the hospital to talk things through.

thanks also for saying I will be strong enough, its good to hear from someone who knows. Sometimes I think I will be able to get through this and other times I just wish I could run away. I just so strongly want to protect my family from all this pain - including my bump.

will look at heartline now.

xxx

Good luck with tomorrow's appointment. You sound like you are doing plenty of research on the implications of your baby's heart problems and Down's syndrome, dreamingoflamu.
Eidsvold might be a particularly good person to talk to as her dd1 had serious heart defects (and I think I am right to say that TC's Lottie didn't).
You will get a lot of support on here whatever you decide XXX

Dreaming, congratulations on your pregnancy but sorry to hear that you have some worries about your baby.

My daughter has significant heart problems and I post on the message board mentioned further down, Heartline There are several mums there whose children have AVSD both with Down's Syndrome and without. Come and have a chat.

Hi dreamingoflamu - sorry to hear your baby has a serious heart defect . That must be so hard when all you want to do is enjoy your pregnancy. Edisvold will be along to help with respect to the heart problems and her story but she's in Australia and they are burying her FIL so she may not be around for a little bit).

I find these threads so hard tbh. I can't not post but I do find them hard, but here goes....

My little girl, has Down's syndrome you see, so how could I possibly tell you that I feel sorry for you in that respect? I don't . I feel terribly sorry that bubs has heart problems, naturally, you must feel awful about that, but in respect of having a child with DS, all I want to do is smile and congratulate you. Sorry if that feels wrong of me to you, but I have to be honest, right?

I can only talk to you about the Down's syndrome side of things, and I can only really be positive, so if you want to hear it, read on, if not stop now.

Lottie will be 5 at Xmas and has just started big school, mainstream. Her teacher greated me the other week to tell me there had been arguments. My face dropped. Oh no I thought, please God, what does she mean. My worries were soon laid to rest as the teacher explained there had been outright rows between the other kids as to who got to sit next to Lottie. So they had had to draw up a rota!!!!! Other mums have already come up to me and said 'oh is this Charlotte, oh God my son / daughter hasn't stopped going on about her'.

She may be a cheeky, strong willed, stubborn, little madam, but she also touches everyone in a very special way. These kids don't know what makes her special, they just know she is.

I won't pretend it's always easy and that I haven't cried, it is had and I've sobbed. But and it's a massive but, I'm so grateful to hvae Charlotte in my life. I wouldn't be without her nor would I change a hair on her head. Oh well ok, maybe I'd make her less stobborn! But seriously, she's the best thing that ever happened to us. She's bought a lot of people a lot closer together, she's made us stop taking things for granted, made us appreciate things more, made us laugh more than anythng or anyone else ever has, and made us more proud than anyone or anything else ever has. She' s made me a better person, (and I was prtty great before !!!!)

She's bought us some much joy. Yes a bit of heartache but more joy than you could ever imagine.

I didn't know Lottie was going to have Down's syndrome and I don't know how I would have felt if I had known. All I can tell you is I'm glad I've got her, glad she's who she is, glad she's all mine.

There are so many terrible things in the world, but having Down's syndrome isn't one of them. And when you have children there are never any guarantees, but having Lottie I actualy do have a few guarantees. She's going to be one very happy and very loved little girl / woman. She's going to struggle, but she's going to get there in the end, and I can also guarantee that when she reaches her goals people who wouldn't normally clap for anyone else, will clap so hard it hurts.

I could go on about her all day but will close now, except to say that I hope you receive the support you need and I hope, whatever happens, and that you and your family will all be ok in the end.

I'm here to talk about 'stuff' if you'd like me to, I'll keep checking back in on this thread, and you can always email or phone me privatley if you'd like.

I can link you to other threads about Lottie and show you photos if that wuld help.

(oh and I'm normally Thomcat when it's not coming up to Halloween!)

Good luck and much love - one very happy and proud mum, - TC xx

dreamingoflamu, I hope that your meeting goes okay tomorrow at the hospital and that you get to ask all the questions that you need to. I found it very helpful to write them all down, we were very lucky in that the hospital we went to assigned us and a councelor as as well as a consultant. As once we walked into the room, all thought seemed to leave my brain. Unfornately in my case, there was not a lot to know about what was happening. But you should be able to get a lot of answers about your babe's condition. Just make sure that they give you all the answers that you want. It is very tough, and I will be thinking of you tomorrow.

At the same time I was going through this, a very close friend also had a diagnosis of severe heart defect and a possible genetic condition. Her DD is now 3 and had her first heart op about 1.5 yrs ago now. She is lovely and enjoying life to the full. She will need additional op in a few years, but it isn't limiting her life at all.

Take courage.

wil lsay def go to heartline boards, they are fantastic over there.

and thomcat you have given me goosebumps again about lottie. i giggled at the seating rota.

Lovely post tc/tb

Thomcat

I am so proud of you, you are as always a wonderful ambassador for DS children.

Dreaming

I am so sorry you received this news,but in my limited experience DS children always add more than they take.

Thomcat, thanks so much for your post. I can understand it must be hard for you to post but please don't stop. I read many of your posts on Mn since my scans which certainly helped me having the confidence to start this thread at all.
I can easily imagine how positive our lives could be with a child with downs - in all sorts of ways. And thats what makes it hard. What we are struggling with are the possible health complications that come with downs not the downs itself - and what they would mean in addition to the heart problem. All these questions I have to ask tomorrow, sadly I think there are few firm answers they can give.

Just to be clear we are nowhere near a decision, and I don't even think we are leaning towards a particular choice. It all feels up in the air.

DId Lottie have any health issues when she was born? One thing we are both very worried about is the time away from our ds whilst being with a babe in hospital. Let alone the emotional impact on us of a verysick child.

I'm rambling so will stop for now.

thanks so much