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

My best friend has adopted children with DS

One of them is 15 and he is soooooo deffo brill he has just started his GCSEs, he is a brill actor and loves singing, we went to see EVITA in the West End in London last week. He loves rugby, basketball, swimming and trampolining.

They are moving home in a few weeks so he will be able to walk to the local shopping centre by himself.

The youngest one is 8 years old, in year 3 at school, she loves dancing and singing too,

I know this is a very scary time for you and one in which you will be doing an awful lot of thinking.

I had a little boy with Down's Syndrome 9 months ago (he was diagnosed at birth) so although I didn't find out while pregnant I do have some idea of what you are feeling right now.

You might find visiting www.dsrf.co.uk useful - You can request a great booklet from them called Bright Beginnings absolutely free.

I've also just read a really informative book called Coping with Down's Syndrome by Fiona Marsh - that has a long section about tests during pregnancy and lists your options very clearly for you.

If you would like to talk about your emotions/experience with parents of children with DS I highly recommend the DSUK email list. You can join that here listserv.down-syndrome.net/archives/ds-uk.html There will almost certainly be someone there who has had the same kind of diagnosis that you have had, so I hope those resources help.

Already posted on here earlier..hope you're doing ok dreaming. Not only are you facing up to this but you are pregnant-and all the ups and downs that entails. Its hard for you (((((((hugs)))))))))

But I just wanted to say that Thomcat-I am sat here with tears streaming down my face. Your last post has touched me more than any I've ever read on Mumsnet. Clapping harder for Lottie-I am a wreck. Gorgeous.

My friend's little girl - she was 2.6 when her brother was born - has coped really well with the upheaval in her life and with the time her mother and brother were in hospital - she's an absolute star. Of course she has had some jealousy and insecurity but her parents have done a wonderful job of reasuring her.

As I said, he has had big health issues and his parents have been through a lot of worry, but he is so, so precious to them.

I am sure my friend would be happy to answer any questions you have. Let me know if you would like me to contact her for you.

Although I have had no experience of what you are going through, we chose to have an amnio for ds and remember waiting for the results. It was one of the most anxious times I had been through.

I think, however, if I knew then what I know now, mainly through the posts of Thomcat and others on here, I wouldn't even have had the test. TC, as ever, explains most brilliantly what life is like with Lottie, and touches my heart every time.

I wish you well in your choices for your family, and join with everyone in supporting you.
xx

Thombat, your post has brought me to tears. It's lovely. Dreaming, do what you feel is best. If you're talking about "protecting your bump", well...

Hi Dreaming. Phew, what a relief. I get so worried that my posts on this subject will come across as me putting pressure on another mumsnetter, or trying to sway you. I would always respect your views and any decision you make, but at the same time I can't pretend to think / feel something that I don't. Thank you for you post back to me. (and thanks everyone else for your commets)

Lottie was born a healthy little girl, and at almost 5 remains that way. She desn't walk yet but that's quite unusual and she took her first unaided steps at school last week (yeaahhhhhh )
Other than being slow to walk, and having a slighty more limited vocab, she's pretty much the same as any other child., (well maybe a bit better than some )

I like to say that she has an extra chromosome you know, not one missing!

My friends DD was born with a serious heart defect, she also has Down's. She's just had her final heart op, aged 5 and is doing really, really well. She's fab We've never thought of her as seriously ill though. She had a poorly heart and had to have some pretty big ops, but none of us thought of her as ill, and she certainly isn't now. She's busy beating up her younger brother and cuddling her new sister.

Since having Lottie I've been lucky enough to meet quite a few mums whose children have Down's syndrome and they are all fighting fit, running round, driving their mums & dads mad and basically being a wonderful part of their families.
And all those mums, bar one, have gone on to have at least one more child.

Personally, I think that my DD2 will be a better person for having a sister with Down's syndrome. I know I am, I know my friends and family are.

As hard as I try I can never put in half what i get back from Lottie. She enriches our lives and the wolrd is a better place, or at least our chunk of the world, is a better place for having her in it.

No advice really Dreamin, which I had, just couldn't ignore. Thinking of you though. x

Thanks Thomcat, some really comforting words there, and echoing Sherlocks words that a child with ds gives more than they take. I really believe every child gives something very special no matter how long they are with us or what sort of life they have.

I will let you know how the meeting with the doctors goes - if you think of any questions that would be good to ask I'd be grateful. Trying to be prepared as I can imagine my mind going blank.

xx

Dreaming. I'm sorry to hear the results of your amnio. I cannot even begin to imagine what you're going through.

You do, indeed, have a huge decision to make and I just wanted to say that I hope you get some sound advice on all of your options.

I hope and pray that the days of 'Baby with DS? Terminate.' are long gone. I hope they are, as so much more is known about DS now and it is recognised that no child with DS is the same.

However, and just to play devils advocate...You also need to know that if you do decide to terminate you will not be necessarily 'doing the wrong thing.' Every family has to do what is right for their (unique) circumstances.

I hope I don't upset or offend anyone by saying this. ...

I can't think of anythoing you need to ask, you're going to be blinded by facts and figures, and you'll need time to let the info sink in. I just want to arn you - these medical professionals always paint a worse case scenario. They are all very kind and sweet but they don't say it'll all be ok, you'll be fine, you can do this. The picture they paint can be quite bleak, and you should take what they say but then add in your own positives.

If I had read a list of all the things that could have gone wrong with Lottie, well, I would have been terrified. It would have sounded dismal, depressing, terrifying. It's nothing like that in reality. Just becasue our children have special needs we ar givien a list of all the thionhgs that might happen. Imagine if every mother was given a list:

• could end up a drug addict
• could end up hating you and runnign away from home
• may well fail all a'levels and disppoint you in their choice of profession.
• could end up a self harmer
• may well become drink dependant
• likey to have a bad accident in their teens
• could get pregnant at 13

Can you imagine, all new mums to be being handed that list! The population would halve.

You get what I'm saying.

Just listen, make notes, come away, digest and then add some positives. We are here to talk stuff through with you and help in anyway we can. You'll get through this and you'll be fine. Whatever happens, it'll all be ok in the end

And Bubble is right, no-one is here to judge you. I will continue to be here and support you whatever you decide. You and your husband have to do what is right for you. For now, you're here and talking and thinking and that's great.

Do you know the Welcome to Holland poem?

My dd1 was born with a complete AVSD and down syndrome.

In terms of info and support - apart from contacting the DSA- UK, there is also a group called the Down's Heart Group - who were invaluable to us.

downs heart group

We knew before dd1 was born that she had the heart defect and down syndrome.

her heart defect was repaired at 8weeks old - stressful time but she has had no other issues with her heart since. We have annual check ups and everything is fab. In fact her aussie cardiologist ( we moved back from the UK) said her repair was a brilliant job and her heart is functioning like a 'normal' one.

The last 4 years have seen us experience amazing highs and lows - no different to any other parent. Most of the lows have been caused by other people's ignorance and stupidity rather than anything my dd1 could do.

The older she gets - the more I see how she is more like other children than different.

The first fews weeks were a struggle. She wasin hospital for 3 weeks when she was born - she probably could have been out earlier but think registrars were hesitant - when head of NICU returned from summer holidays - we went home the next day. IT was then up to London for her surgery and recovery.

That was six weeks in total out of the past 4 years.

Her day to day care was not to demanding in a lot of ways - she slept through from the minute she came home from hospital. Dh and I had to do four hourly feeds so we had to remember to set the alarm and get up in the night. Twice daily mediation and that was it. Not such a big deal really - although it may seem like it at the time.

My dd attends mainstream kindergarten and we are in the process of deciding on which mainstream junior ( primary) school she will attend.

We have since had another dd - who adores her big sister and vice versa... in fact we are due to have no3 in March.

Since having my daughter I have entered a whole other world, met people I would never have met, learnt more than I could ever imagine about all sorts of conditions and special needs children, seen the amazing kindness of strangers - usually the ones you would least expect it from ( unfortunately also the ignorance - but that is their problem), learnt to enjoy the simple things to appreciate the small steps made towards milestones and to just stop and take it easy.

However - it is your decision and I can only share our experience. I would not swap dd1 for the world and could not imagine my life without her.

Other than having her tonsils, adenoids out and grommets in ( not necessarily limited to children with ds)- dd1 is the picture of health - no other issues. Once her heart repair was done she has gone on from strength to strength.

\link{http://www.mumsnet.com/Talk?topicid=1700&threadid=205605&stamp=060827094613\pic of dd1)

try this - pic of dd1

Welcome To Holland
by Emily Perl Kingsley (following the birth of her son who has Down Syndrome.)
c1987 by Emily Perl Kingsley. All rights reserved.

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Hope you appointment with the hospital goes well today.
Hope, if you feel like it, you can tell us how it went and how you're feeling. Thinking of you, TC xx

Oh mate. Not really sure what to say as i've never been in that position, but sending you big hugs and hoping you make the decision thats right for you and your partner.

I have just come across this and I am so sorry. I remmeber your thread about the amnio and I advised you to go for it as I did. I do think regardless of the result it is best to know. Good luck and lots of support for whatever decision you have to make.
(((Big Hugs)))

dear dreamingoflamu,

I am sorry you are going through such heartache.

I have a dd who is now 5.5 yrs old, she was born with DS and a heart defect similar to an AVSD. Her heart was fully repaired when she was 7 weeks old. She had a lot of complications afterwards and was in hospital for a lot longer than planned - 6 weeks - but we got through it and it didn't take long for her to recover and become an adorable, happy baby.
We already had a dd1 when dd2 was born, who is 18 months older, it was all quite hard, coping with the time is hospital as well as having a toddler at home, but in reality it was a short time, although of course it didn't feel like it back then.
Her heart is absolutely fine now - she's been put on check-ups every 5 years, and she doesn't even have a murmur.

Dd2 attends mainstream primary school with a full-time support assistant and is doing well. There was an article about her and me in the Sun a couple of weeks ago which tells 'our story' . If you click on the 'prev12' link at the bottom you will also find stories from other mums, one who also had a prenatal diagnosis.

If you decide to have this baby, there is a great DS-UK email support group. We're a friendly bunch and have a few members who had a prenatal diagnosis.

Good luck.

Thomcat, just want to say thanks for your posts - I've learned so much from you and with every post I learn not to "fear" the "risk" of possibly having a child with Downs one day. A leaflet about DS writtten by you should be handed to every pregnant woman at their booking-in appointment and certainly before any amnio. In my experience of having a "high-risk" triple test result and being pushed very hard towards having an amnio (which I refused), many in the medical profession are incredibly negative about Downs and do their best to scare people stupid about it.

Dreaming, you have my support too; I could easily have been in your shoes. Mumsnet is one of the best possible places to get the information and support you need relating to these issues.

This must be such a shock to you. Our child had markers too and we were upset for the baby but decided we would have him no matter what.

You are obviously scared and maybe it would help to work out what it is you are actually scared of and see if it is something that could be worked out.

It is awful but I often think decisions like this come down to what can you most live with - a baby with extra needs or having a termination. Only you and your partner can decide that. If you don't want to have the baby would adoption be a possibilty for you?

If you do want to have the baby then congratualtions on your impending arrival and I am sure everyone on here will support you.

Take care.

ohhh geekgrrl - lovely article and fab picture. Her cheeky expression in that photo is fab, made me giggle, lovely pic, glad I got to see it

Crossed posts woith you snowleopard - what a lovely thing to say, thank you

geekggrl - she has grown up so much from the DSA pic - she is gorgeous.....