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Antenatal tests

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Original poster

Amnio positive for downs

19 replies

George1972 · 06/02/2015 12:39

Amnio test has come back positive for downs, we are in bits and don't know where to go from here. I am 17 weeks so have been told we need to wait for the 20 week scan to find out more

OP posts:

KittyandTeal · 06/02/2015 16:23

I can understand that you are devastated now.

However, many people with Down's syndrome can live happy and productive lives.

That is a horribly long time to have to wait. Have you thought about the decisions you will make? Has anyone talked to you about the markers for how server it may be?

I don't have any experience if Down's syndrome but we recent lost our dd2 to Edwards (unlike DS it is 'incompatible with life) so I understand the waking and the horrible decision making process.

Do you have a good medical team who have explained exactly what will happen next?

Original poster

George1972 · 06/02/2015 16:37

We are fairly sure we will keep him unless the scan shows major life threatening issues. We have been told told it's impossible to say how badly affected he will be until after he is born. Although we had a scan yesterday which didn't show up anything the consultant thinks it's to early to check his heart properly which is why she wants us to wait until 20 weeks.

OP posts:

Purplehonesty · 06/02/2015 16:39

I'm so sorry for you. You must be in shock, is this your first baby?

SirVixofVixHall · 06/02/2015 16:52

I realise this must be a huge shock, but I know a little girl with Down's who is as happy and full of life as her sisters who don't have it. She is really engaging , outgoing, chatty, it is very easy to forget that she has any problems at all. What most parents want for their children is for them to have lives that are as happy as possible, full of love and laughter, and that they reach their full potential, whatever that may be. All these things are as true for a child with Down's as any other. I really hope the scan doesn't show anything too seriously wrong with his heart.

Original poster

George1972 · 06/02/2015 16:57

Yes it will be our first after we lost 2 in the last 18 months both at around 8 weeks. I am 42 so we really feel that time is running out. I guess it's the fear of the unknown, we have no other children to consider so can devote all our energy to this little one but can't help worrying about what happens when we're no longer around.

OP posts:

WipsGlitter · 06/02/2015 17:04

I have a little boy with downs. He's now five. He is a joy. He had no heart problems, attends mainstream nursery and it's not been half as awful as I thought it would be. We didn't find out until he was born.

Please feel free to PM me or ask anything.

KittyandTeal · 06/02/2015 17:09

I'm guessing that the main concern will be heart problems.

Before we got our amnio results for our dd they found a hole in her heart. The plan, if the result was negative for trisomies (which it wasn't) was for a specialist fetal cardiologist do a cardio scan at kings.

If they do find a problem with the heart they will be able to do very detailed scans to tell you the extent of the issues.

I really hope you get the results you are hoping for. I know it doesn't help your situation but after telling someone I was waiting for results for trisomies she looked at me sympathetically and said 'downs?' My response was 'I wish it was!' I know it is easy for me to say having been on the other side, and I truly understand how upsetting it must be. However, Down's syndrome is not always the life threatening condition it used to be c

SirVixofVixHall · 06/02/2015 17:21

Kitty I am very sorry you lost your dd

MontserratCaballe · 06/02/2015 17:31

Kitty, I am so sorry for your loss.

George, so sorry you have had a shock. I am sure that you need time to think things through. There is a fab girl at our school with Downs who is 11 now and about to go to mainstream secondary. She has lots of friends and is very happy, so it is not all doom and gloom by any means.

Thinking of you and sending you my very best wishes.

Christelle2207 · 06/02/2015 17:40

You poor thing. If it helps at all I have a friend whose ds1 has downs. Yes he's had some health issues but is essentially a very happy kid with a relatively normal life (8). His parents clearly didn't find it all too overwhelming as they went to have (healthy) ds2 and dd- a lovely little family. Hope it works out for you too x

Original poster

George1972 · 06/02/2015 17:55

Thanks wipsglitter I'm sure when I can think straight I will have loads of questions.
I'm sorry for your loss Kitty i can only imagine what you must have been through.
Just had another major wobble but I guess that's what it will be like for a while yet.

OP posts:

msrisotto · 06/02/2015 18:05

I have no experience or words to contribute op, but I saw this clip and thought of you. It's beautiful but made me cry and i'm not hormonal so you've been warned.
www.upworthy.com/a-pregnant-woman-learns-her-baby-has-down-syndrome-people-who-have-it-answer-her-one-big-question-2?c=ufb4

KittyandTeal · 06/02/2015 19:07

George you will have lots of wobbles. Hopefully your little one will be free of any life limiting conditions but you're still waiting to find that out.

You have a long wait, it's going to be hard. Either way you've had to totally rethink your babies future. It's a little like grieving, I see it lots in parents I work with whose children are diagnosed with ASD etc, you are reconciling yourself with a different future for your child. It's hard.

Please be kind to yourself in the mean time. Take a bit of time off work if you think that will help.

If you are really worried I know the fetal medicine centre in Harley st offer specific cardio scans. Some of their team did our amnio and in the end our termination. They were fantastic and so caring. Might be worth thinking about.

WipsGlitter · 06/02/2015 19:17

LMLytton · 06/02/2015 19:36

Have a read of Nella Cordelia's birth story, but you will cry.

Also have a look at some of the blogs, downssideup, the future's Rosie, and the one by Caroline White, seb's mum which may only be on Facebook and also her tedex talk which must be on youtube.

fairgroundsnack · 06/02/2015 19:40

Don't be sorry is another fab blog by a mum whose son has DS

SaggyAndLucy · 08/02/2015 11:27

Hey. Congratulations on your beautiful baby boy.
My DD2 Lucy is nearly 1 and has DS. like you we found out at 12 weeks. After a cvs confirmed the results we were devastated. Then we decided that it was the best of a bad lot, so to speak, and there followed 6 months of worry and doubt and love and terror. (ask Wipsglitter about us. She helped support me through the early days, they were very up and down!)
once she arrived though everything changed. She has made us happier than we ever imagined.
She was born with a complete AVSD, a series heart condition, which was fixed at 12 weeks. She has never looked back.
She's funny and clever and cheeky and smart. She's met all her milestones so far and some, and we wouldn't change her for the world.
It's been hard, the worry before her op was crushing, but the future is unknown for everyone. That's just life.
I'm happy to pm if you'd like to talk or have any questions.

MontserratCaballe · 08/02/2015 12:13

That's a lovely post, Saggy. Your DD sounds fab. I have a Lucy, too .

How are you feeling today, OP? Thinking of you

Swishyswashy · 10/02/2015 13:48

Hi George, I don't know if this is any use but I had a high risk result for downs, had a cvs, it was clear, but our son has turned out to have an extremely rare genetic condition which we only discovered after he was born. Discovering something was 'wrong' was traumatic but he is the most glorious, lovely, wonderful son anyone could have. He has 2 older siblings who adore him and he loves his family. We have met a lot of other families with children with all sorts of difficulties and differences through his disability and whilst Down's syndrome sounds scary before you meet your baby, you will love him or her exactly as you would a baby without downs. Our son's future is unknown- he may not sit, or walk, or even have a long life- but despite the trauma of the last few months I would not change things. I wish you so much luck and hope so much that you have a beautiful, healthy baby with Down's syndrome who brings a lot of happiness to you. Good luck. Your child will teach you so much.

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