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Antenatal tests

Get updates on how your baby develops, your body changes, and what you can expect during each week of your pregnancy by signing up to the Mumsnet Pregnancy Newsletters.

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Original poster

NT results of 1 in 5. I need positive stories here please.

99 replies

SaggyOldClothCatPuss · 11/09/2013 14:47

All calm has departed.

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TelephoneTree · 24/09/2013 14:33

oh yes as well as DS having his AVSD repair at 7 months old - I used to work in cardiac surgery - I ran the heart-lung machine, so I can try and answer any questions too.

You should have a proper cardiac scan in the foetal medicine centre at about 16 weeks, so do get yourself booked in.

I'm so torn between wanting to give you loads of reassuring info and stories with giving you time to just be. Much love anyway.

Original poster

SaggyOldClothCatPuss · 24/09/2013 20:18

Every post helps, honest. I just have to be careful where I read them because they keep making me cry! in a nice way Without MN and all of you lovely people I would feel much more at sea!
I have the heart scan on Tuesday.

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Original poster

SaggyOldClothCatPuss · 24/09/2013 20:20

No gender yet. Im going to bug the sonographer on Tuesday!

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WipsGlitter · 24/09/2013 20:21

There's a good few of us here Saggy. Like telephone says fire away with the questions.

saintlyjimjams · 24/09/2013 20:31

I made a few years ago loosely based on Holland (although it's about severe autism rather than DS)

Good luck for the scan

MrsSpencerReid · 24/09/2013 20:32

Saggy, I have just come across this, so sorry you had such a hard time getting answers but am glad you do now, will keep my fingers crossed for some good news at the heart scan. You were so supportive of me on a previous thread so if there is anything I can do please say.
I come across children with DS through my job and they are some of the happiest and loving children I know, they quite often steal the hearts of the staff mine included. Will be thinking of you and your family

saintlyjimjams · 24/09/2013 20:38

And incidentally 4 years after writing that blurb underneath the video I still agree with it all. Except that life is even better than it was then and ds1 has made progress that I couldn't have imagined and I really wouldn't change anything about my life (or his, except maybe to give him speech, but we've found a way round that) :)

I don't want to sound too pollyannaish (I know I can be) but for us being sent down the 'wrong' path has been lifechanging in a very positive way.

LargeLatte · 24/09/2013 21:34

Didn't want to lurk so saying hi. Always here for you. And not sure if you know already that my nephew has DS, and he also had a hole in his heart, which closed naturally as he grew.

I say cry away. I have had massive public blubs about far less traumatic things. I got caught off guard by some chocolate limes in Tesco once, and cried like a baby over my Nan, who at that point had been gone for 4 years (I digress slightly)....but despite many visible blub fests, no one has yet locked me up, so you should be OK snivelling away into your iPhone.

Disappointed there is no cider emoticon.

Original poster

SaggyOldClothCatPuss · 24/09/2013 22:18

LargeLatte Lurk away. You are more than welcome.
Disappointed there is no 'bloody lovely friend emoticon.

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TelephoneTree · 25/09/2013 12:21

How are you and your DP today? Is he getting used to the idea?

Prambo · 25/09/2013 13:30

Saggy, I am thinking of you xx

Jolleigh · 25/09/2013 13:55

always here if you fancy a chat Saggy . You've found some brilliant ladies on this thread

BadlyWrittenPoem · 25/09/2013 15:32

Thinking of you saggy.

Re: your worries about what will happen when you are no longer able to care for your child and whose responsibility it will be. I have a friend with a brother with Down's syndrome who is in supported living and is very happy there. I also have a cousin with learning difficulties who now lives with his sister. And I have a brother (not DS) who at some stage in the future will either need to live with us or have us organise/run/manage his house/finances etc for him. It couldn't have been predicted so it's not like abortion would have been an option but regardless he is my brother and just like I will make sure my parents are okay when they are too old to look after themselves, I will make sure he is okay. Right now I guess this baby probably feels like an anonymous "person with downs syndrome" so it is hard to imagine but he or she will be your existing children's brother or sister and they will have a relationship with and love them regardless.

Original poster

SaggyOldClothCatPuss · 25/09/2013 16:28

Thank you Martians.

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lumpylumps · 25/09/2013 16:40

Hey saggy!! There would be no rain cloud. You're going to have a gorgeous baby and be a fab mummy. Sending lots of unmumsnetty

BadlyWrittenPoem · 25/09/2013 17:06

saggy, I certainly don't think you would be like a huge black raincloud. You are still having a baby which is a wonderful thing - just you will have different challenges and a different path ahead of you to the one you might have expected/chosen. Why shoudl you not be with us just because you know your LO has a disability? There is a place for special separate groups/support for children with disabilities and their parents but I don't think you need to or should be separated out from everyone else as if you are a black sheep or something. Although I realise that being the parent of a child with a disability is entirely different to other experiences of people with disabilities, I have had quite a high exposure to children with disabilities in the past both through my brother and through work and I think that including people in mainstream society as much as possible is a good thing as it avoids exagerating the "differentness" and I think would reduce the fear that people have of having a child with a disability. (Obviously everyone wants their child to be "perfect" but I think fear of the unknown adds unecessarily to it.)

Imeg · 25/09/2013 17:46

Thinking of you Saggy.

Although it's not in any way the same as Down's syndrome, our scan on Monday showed that our baby has inherited my husband's condition affecting his hands/feet. So if you do want to return to the Martians thread you won't be the only one that has encountered some issues: they have been really lovely and supportive for me.
I meet older teenagers with Down's syndrome at work who are attending college and learning various different skills alongside our other teenage students. Although they tend to be a lot more pleasant to work with than the average teenager, including showing actual cheerfulness and enthusiasm, which seems to be more or less unheard of from most teenagers...

TelephoneTree · 25/09/2013 21:21

We go to Downright Excellent on a Friday morning and every year they/we have an AGM. Last year and this year they are also having a performance from the Stopgap Dance company - a dance company that collaborates disabled and non disabled dancers. They were really good and it was lovely for us to see adults with Down Syndrome in action as it were! Anyway - I just found a dance of theirs on you tube and thought you might like to see it. It's between a 'typical' woman and a man with DS:

realnappiesmum · 25/09/2013 21:42

Hi Saggy. Congratulations on your pregnancy. I have a beautiful little girl with down syndrome. We found out after 20 week scan showed a number of soft markers for DS and was confirmed by amino at 21 weeks. She is amazing and can light up a room with her megawatt smile .

IceNoSlice · 25/09/2013 22:05

Wow, isn't MN lovely.

Saggy you are a Martian. I think it's time for my first ever

JK10 · 25/09/2013 23:35

saggy you'll see your beautiful baby and he/she will be perfect because it is your baby. Not saying its all going to be sunshine and roses but it never is for anyone as life always throws us little tests, some more than others. You never get delt a hand bigger than you can cope with and children who have extra special needs tend to have extra special families. Wishing u lots of luck and support. Just take time out with DP and talk everything through, lots of emotional feelings and thoughts need to be discussed when you both feel ready. Look after yourself.

Impress73 · 26/09/2013 09:21

Hi Saggy, just popping in to say congratulations. I'm mum to a fab 3 yo with ds who had some complicated health problems inc cardiac issues. It was tough but 3 years on and he's a bundle of energy and perfectly healthy. If i can help at all, shout up

Entering into this new world of having a child with disabilities can be daunting but do you know what, it's ok. Our little man has changed our family for the better and he is the centre of our universe. Expect lots of appointments in the early days, take all the support you can get and most importantly, enjoy being a mum.

Also not sure where you're based but there are some wonderful local support groups out there who would welcome you with open arms. Best of luck with the rest of your pregnancy and please don't worry, things have a funny way of turning out ok when you have Down's syndrome in your life

TelephoneTree · 01/10/2013 10:08

Mind like a sieve but if I've got it right - I hope the scan goes well today and you find out if it's a boy or girl x

Edamame · 01/10/2013 12:01

Thinking of you today, Saggy

Original poster

SaggyOldClothCatPuss · 01/10/2013 21:47

Finally home!
Baby has a complete AVSD. It sounds incredibly scary, but the cardiologist says 95% success rate and an excellent post surgery outlook.

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