just found out unborn baby has down syndromme help

[bubbles3037]

im 3months pregnant and have just found out my baby has down syndromme and im panicing has anyone got any advice

Ignore the poster who says there will be violence. People with DS actually have very high emotional intelligence and form lovely relationships.

Massive generalisation. Go into it with your eyes open, then you will be forearmed. Hopefully it will be ok, but you have to look at all sides.

Congratulations on your pregnancy OP. I am sorry to hear you are worried and not feeling very supported by the medical professionals around you - have you told them you definitely want to keep the baby? I would really recommend checking out the positive about down syndrome website, the dsa (down syndrome association) website and blogs like 'don't be sorry'. My dd is now 4.5 and had a post-natal diagnosis of down syndrome- she's amazing 😊

Err, no. I've been here for ages and only post under one name.

Well done on your professional experience. Not very professional to disparage parents who are actually living the experience though is it? You have violence - teenagers with hormones, but little or no self control. Best steer away from massive generalisations though, right. Our children have enough to deal with without this shit.

Yes it's hard. Raising children is, no matter how many chromosomes they have. The rewards are worth the work.

I was particularly referring to the three posts before yours, but there's nothing to stop multiple accounts, anyway. No matter how long you've been here.

And you took my quote out of context:

that the range of difficulties is immense. Children with serious problems won't be in mainstream. For some children, you would hardly know and they live full lives with little support, at the other end of the extreme, you might have non-verbal, non-communicative children. You have violence - teenagers with hormones, but little or no self control.

Maybe I should have added 'could'/ 'might' or 'can' between 'you' and 'have' to make the post clearer and easier to understand.

And before you dismiss 'professional experience', remember that you will probably be relying on that. It's the other side of the coin. Try doing it without.

I had a dodgy test and refused the amnio. I was more afraid of miscarrying my much wanted baby than I was of him having Down. I lay awake practically every night worrying about my baby. When he was born he did not have Down syndrome.

In retrospect I actually think I was a bit naive and it was the protective pregnancy hormones kicking in. He is the youngest of four and if he had actually had Down syndrome it would have had a big impact on the older kids. I doubt I'd have been a great mother to him either; I'm not very patient and fairly selfish.

I honestly think you should reconsider having the test. Knowledge is power.

Of course we rely on professionals and we choose them very carefully. I’ve binned off or complained about several who didn’t have the right approach. The OP’s looking at raising a child with DS, not changing career.

bubbles3037 many congratulations on your pregnancy! It must feel a scary, scary time and you must have so many questions, but posters here have posted a lot of great links. It’s probably already been posted but the Downs Syndrome Association (www.downs-syndrome.org.uk/for-families-and-carers/local-support-groups/) lists local support groups and if you’re on Facebook, the Future of Down’s group is a great community of parents and relatives of people/kids with DS, and hugely supportive if you have any questions from parents further along this journey 😊.

I’m a relative newbie, my daughter is only two and a half, but I wish I could go back to the slightly shell-shocked me, having just been told postnatally that my baby had T21, and show me back then everything she has achieved. She’s nearly walking, has 86 Makaton signs, 16 words and is such a bright little thing. I’m so proud of her, as I’m sure you’ll be of your little one. Good luck - it’s a rollercoaster, but enjoy the ride!

BikingBeatrix’s post is excellent, but I have to say, Notevilstepmother I hate the Welcome to Holland poem with a passion, but different strokes for different folks!

OP, you might want to think about who you share your news with at this stage. You are only just starting to process this information and start understand what it means to you. Have a think about who will be supportive of you before telling everyone. Be mindful that some friends or family may push you to have a termination.

So ... you haven't had an invasive test , bet are just saying you have high odds . You need to realise your baby may not have downs but may have other issues as well as it may be perfectly NT .
Is English your first language ? You do seem a little muddled about the info coming your way .

Of course we rely on professionals and we choose them very carefully. I’ve binned off or complained about several who didn’t have the right approach. The OP’s looking at raising a child with DS, not changing career

And she needs to make her own informed decision, not based on airy-fairy happy, happy promises. You can't 'bin off' a child. The decision (either way) cannot be unmade.

Personally, I would have further tests before making any decision, but that's me and not the op.

OP, you might want to think about who you share your news with at this stage. You are only just starting to process this information and start understand what it means to you. Have a think about who will be supportive of you before telling everyone. Be mindful that some friends or family may push you to have a termination.

And some may push to keep, even though it's not their decision either.

I don't believe anyone is "airy fairy" "happy, happy promises" at all!

Wow, this is amazing. Well, my cover is blown. I am so totally invested in a stranger’s pregnancy that I will brazenly lie about the reality of life with my hideous uncontrollable monster of a child in order to drag her down into the pit of despond with me.

Mwahahaha.

OP, everyone’s entitled to throw their two penn’orth in here. In the real world there’s tons of information and support out there for you. People have mentioned some really good links on this thread. Phone up the Down Syndrome Association, find your local group, go along and meet some real families. Best of luck with everything.

Congratulations on your pregnancy
Can I recommend www.21together.org.uk/ if you’re in Kent area, great charity working to educate and challenge perceptions of Downs.
Wishing you a healthy pregnancy for you and your baby

If you're on Facebook, have a look at Don't be Sorry. Inspirational. ⭐️

Op . I'm worried you are making decisions without the facts . They can't tell you the baby has downs with 100% accuracy without an invasive test . They are just giving their educated opinion .
I know you want to keep the baby regardless but I think you need to make sure it's clear in your head.

OP, you can pay privately for an NIPT blood test. On you, not baby, so non-invasive, no danger of miscarriage. It's apparently 99% accurate and will give you a definitive result.

The NIPT is not definitive, it still just gives odds, it’s just that it’s more accurate odds than the combined screening.

It’s really up to bubbles whether she wants to know definitively or not - and take the invasive test that goes along with that. She may decide that arming herself with info and support in case her baby does have DS is the way forward, and then have a happy surprise if the baby turns out not to have that third chromosome. But an amnio or cvs is the only way to know for sure.

UndertheF1oorboards I’m also floored by how DressandGo is so hostile towards the experiences of us real parents who are actually living this. Saying there’s a variety of experiences is one thing, but accusing those whose lives don’t fit in the stereotypical doom and gloom box of lying and having an agenda is just baffling.

Use the links for help.

One piece of advice, it's OK to 'mourn' sorry can't think of a better word the baby you thought you were carrying.

It's natural and normal process.

Hi OP,
Hope those links have helped :).
My family member with downs syndrome is the biggest blessing in my life.
I also have very positive experience of both older children and adults with downs syndrome.
No person is without their challenges. The teenage years arent plain sailing for any of us...I wish you all the best with your pregnancy and baby :)

Indeed @curliegirlie ... I'm just worried that she thinks they have said the baby definitely has downs when that isn't the case . It could of course be a myriad of genetic issues , some kinder , some not ... she needs the correct facts .

Congratulations. Well done for not being pressured into amino if you don't want it. It's useful for those who do, for info, decision making and planning, but every woman should make her own choice of what she can manage. Many medical professional have bias against differently abled children being born. They want everyone to be cured or not to exist which is ridiculous as lots of disability occurs at or after birth. They assume no one will proceed with a pregnancy that is not 'perfect' but your baby will be a perfect version of themselves. Lots of joy and heartache ahead, unique, just like any other child. Make your preparations, find out what help is available and enjoy your special baby

Many medical professional have bias against differently abled children being born.

That is incorrect and grossly offensive. Medical professionals want every child to be given the very best care possible so that they live the best lives they can do, regardless of the issues the face.

I appear to be coming across as hostile, but that is not what I'm aiming for.

I think pressure either way is bad. Maybe it's because I read the promises of a wonderful childhood, with a happy, loving child. That may be true, but there are no promises and you cannot guarantee that that will be the case.

I don't think promising certainties either way helps.

The op needs to to the testing she feels comfortable with.
With that knowledge, she needs to weigh up all of the possibilities the future might bring.
She needs to use this knowledge to make her decision.

When I had my scans for my twins, they both looked absolutely fine. Screening revealed nothing problematic. Then one of my twins stopped growing, stopped moving and nearly died. He has a very rare illness (one in 80k) which requires a lot of monitoring and care.

There are a few conditions that are screened for, because they can, but in reality any child can be born with any one of thousands of disabilities and you would never know it in advance. I met a woman in hospital the other day whose twins have cerebral palsy and epilepsy, and need far more care than my niece who has DS.

I’m just trying to say that having a baby carries a risk of having a baby with a disability or health problem, and this takes some getting used to - in some ways knowing in advance is a positive thing, it gives you time to process and research and figure things out.

There should be a genetic counsellor available for you to talk to, and I’m sure there are support groups in your area or online.

My son with his scary rare illness is just my son, just like my other son, I don’t think of him differently, I just have to pay a bit more attention to him. Hang in there