# My son has downs syndrome, 19 weeks pregnant



## shari75

Hi my name is sharon, Im not sure if im posting on the right thread as im still pregnant with my little boy.
I had an amnio on friday last week because my risk from the blood test was very high for downs and the amnio confirmed that my LO does ideed have downs syndrome.
Im desperate to talk to other mums who have been in the same situation. Im going through a barrage of emotions right now. I know i will love my son fiercly but im also worried what the future holds for him. We are waiting on getting a detailed scan of his heart at 22 weeks to see if they can detect any problems so im feeling very anxious about this also.
Any advice would be wonderful from other mums that have been through this.
thanks x


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## Marleysgirl

I haven't been through this, so haven't any specific advice to offer, but I'm good at :hug:


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## JASMAK

:hugs: Let us know how the scan goes...I will be thinking of you. I am sorry to hear of all you are going through.


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## hellywelly

Sorry to hear this hugs xxxxx


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## LoraLoo

Really hope that your 22 week scan shows no problem with your little mans heart :hugs: and that someone else can offer you some advice/support (of course we are all here for support but might not have the answers to any questions you might have iykwim!) xxx


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## mom22boys

I have a 10 year old son with Down Syndrome. I did not find out my little one had Down Syndrome until after he was born but the emotions and all are the same no matter when you find out. If you have any questions feel free to message me!!!! HUGS!!!!


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## luckybreak

Hi Sharon, I have an 8 year baby girl with down syndrome...actually I had the test done (not amnio) and it all came regular no sign of Downs, what do you know? surprise surprise! I was considered high risk so I had a lot of ultrasound and they never caught a thing, no heart problems nothing. But it is normal after they are born their little heart hole that is supposed to close at a certain age by its own does not closes and they put a little plug. I must say Having my daugther was the greatest blessing I have ever received the joy she brings to my life could never be replaced...she makes me want to be a better person each day...but you are right with those happy emotions it comes the worrying of what if something happens to me? what if? what if? you just gotta take it one day at the time...you will get to see with time if your child will be high functioning or not then go from there. Let me know if you have any questions I am here for ya :hugs:


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## gracesmumxx

i have a 5 1/2 month old daughter with downs.i didnt have the tests so was a complete shock when within an hour of her birth we were told she prob had DS. Grace also had a severe heart defect which has since been fixed by open heart surgery 2 months ago. I completly undertand your worries. For me, the first night she was born i cried and cried worried sick about what would happen to her when we died - i know it sounds stupid but i wanted to protect her n the thought of her being alone scared the hell out of me. In reality the old steriotype of a DS person isnt like that anymore. I expect grace to do just the same as other children - just a bit later, she''ll go to school, possibly college, have friends. Times have changed a lot and iv learnt that since having grace. Dont get me wrong i dont expect this to be an easy journey and having grace means my life will be diffrent to what i expected but its diffrent for the better. Ds babies/children/adults have an extra special something. Its frightening learning you child has a disability but i remember, after the docs had sat me down to explain everything the midwife who delivered grace said that her sister had DS and that in their house the easter bunny and santa will always exist and it will always be happy. That made me smile n made me feel reassured in a way. Even now when i start to feel down it makes me smile. Sending big hugs for you n your special bump x x x x:hugs::hugs: Message me if you have any q's :)


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## velvetina

I hope your scans go well and you get some comfort and support from others here. I am 15 years into having an autistic son and I promise you the fear and anxiety does lessen. Thinkin of you . x hugs


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## x_Carly_x

Sorry to hear of your worries, I haven't experienced this myself, but I used to work in a nursery where there was a little girl who was about 9 months old and she had DS, she used to come into nursery a little later than the other kids, and she used to brighten the room as soon as she came! She was the happiest little girl i've seen in a long time, and had aome very special bonds! Hope everything goes well with your scan x


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## shari75

Thankyou ladies, your kind words help alot XX


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## Nathyrra

Hey chickie,

First of all... (the most important thing!) Congratulations on your pregnancy with your precious wee boy. =)

Secondly, I really feel for you having to be put into this position. It's not easy. It's a grieving process right now and it IS ok to feel a range of emotions. It doesn't make you less of a mommy, it makes you human. Let yourself feel them, it's only then that you can except them.

I gave birth to my perfect son with Down Syndrome last October. No markers, aged 26, absolutely hit me like a bolt out of the blue and absolutely floored me. I didn't find out until the day after he was born. I spent my whole 4 days in hospital crying into a pillow. I was devastated. Actually I spent months crying. It took about 8 months to get over the shock, and I still have bad days sometimes but they are fewer now. It's mostly worrying about the unknown.

I say to my husband all the time now 'If only I could have known then what I know now, I wouldn't have mourned so hard' My son is an absolute angel. He's such a good, chilled, funny baby. My heart bursts when I think about him. He was everything I thought I would never want to happen to me, but everything I needed, I feel a huge blessing as been bestowed on me now.

The good news is, Down Syndrome is NOT as bad as you think it is. Major funding has been put into research now and just last month, for the first time ever, a major pharmaceutical company has started clinical trials on a drug to help the cognitive skills of people with Down Syndrome. This is Huuuge! My son gets Physiotherapy and Early intervention weekly and with this gentle guidance, he is progressing at the same rate as a typical child. He's talkative, happy, inquisitive and crafty. All the things I thought he would never be! He already is. 

Sorry for the essay, Just wanted to give you all the things you need to hear right now that I would have given my right arm to hear when I was first told.

The very best of luck at your next scan. 

If you need any extra support, I can put you in contact with a phenominal community of mommys that also have children with a little extra. =)


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## Aidedhoney

Good luck for your heart scan xx

My son was born with a CHD called Truncus Arterosus which i one of the more rarer ones. He has had 4 heart ops 2 of them been Open Heart and he has done amazing.

I see your in Scotland too which means that bubs will be at Yorkhill if there is a CHD? Is it Dr Walayat thats doing your detailed heart scan? He looks after us?

Sorry i cant help on the downs side but a CHD can be very easily treated thinking of you x


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## Caezzybe

Congratulations on the forthcoming arrival of your baby boy :) I have a little boy called Logan with Down Syndrome who was diagnosed after he was born. He is now 12 months old and is the most lovable, cute baby you could ever wish to meet. From the day of his diagnosis, my husband and I set about reading everything we could about the condition and linked up with a couple of local Down Syndrome groups who have given us a lot of support. Logan has regular physio and is awaiting a speech and language assessment. He is also on the list for Early Years learning, a pre-school teaching service. We also have activities with one of the DS groups, including a specialist early intervention programme and a DS playgroup. They also have regular coffee mornings for parents and little ones to meet up and chat.

I was devastated after Logan's diagnosis and so was his Dad (he was 1 in 560 so we were very surprised). We soon picked ourselves up and were determined that we would give him the very best support we could offer. I know that being told your baby is different is an awful shock and can be upsetting and overwhelming with a mix of emotions all at the same time.

Having a baby with DS is also different from a practical point of view. At first, you don't know anything about your child's future, which can be a big worry. The first year seems to be a never-ending round of medical appointments, hearing tests, sight tests, cardio tests, assessments, paediatrician appointments etc. but I've been told that this isn't as intense after a while and at least then you will know exactly how your child is physically. From a medical point of view, my son has a very small hole in his heart that is expected to heal on its own, some sight problems and inconclusive hearing levels. From a development point of view, Logan is doing so much better than we could have ever imagined. At 12 months old, he is sitting, commando crawling, double-babbling and just starting to support his own weight on his feet. That's the thing though, every child is an indivudual and they all develop at their own pace.

I've had a precautionary fetal echocardiogram done during my current pregnancy and they found nothing wrong (I'm currently 30 weeks pregnant with Logan's baby sister who has a 1 in 750 risk and I refused invasive testing). To be honest, it's not really that different from a regular scan and the hospital staff were lovely. They found nothing wrong at all, but I also found out that the heart problem Logan has (atrial septal defect or ASD) wouldn't have been picked up by a fetal echocadiogram as it's the sort where a hole normally present before birth doesn't quite close afterwards.

Could I make a couple of recommendations to you if that's OK?

Firstly, if you haven't seen it, the Down's Syndrome Association have some really good literature:
https://www.downs-syndrome.org.uk/i...Publications/general/continuing_pregnancy.pdf
And if you look at the New Parent information on this page, there is a lot more if you can face reading it:
https://www.downs-syndrome.org.uk/resources/publications/general.html

Secondly, it's well worth contacting a Down Syndrome group run by parents in your local area. Most of them have coffee mornings where you can go along and meet people who have been in the same situation and also meet the children to give you more idea of what to expect. I'm not sure where in Scotland you live, but if you Google Down Syndrome and your nearest town/city, you are bound to find at least one group that you could go along and chat to.

I wish you all the very best with your upcoming heart scan and hope that everything turns out well for you. There are a lot of people in this forum with special needs children and we all try our best to provide encouragement, advice and support for other parents with special needs children.

Huge hugs to you :)


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## mamak07

Hello!! My 2nd daughter is 15 months old so I am still very *new* to the world of Down's syndrome. We had a high risk triple but didn't have the amnio because I already knew what the result would show us.... go with the flow of your emotions and don't worry - you are going to go through lots of feelings over the coming weeks - one thing is for certain though, you will be overwhelmed with love when you get to meet your little man!! Truly and honestly, 15 months down the line and life is really wonderful. I am now pregnant with number 3 (I must be nuts!) and have refused invasive testing even though I have a higher chance of having anotehr baby with DS. I know eactly what's in store for me if this one does have DS and I'm not worried in the slightest!! I have a huge community that would love to meet you and your boy - including other expectant mums. Hope you will come over and meet us...
Look up a group on facebook called "Future of Down's" and a website by the same name - it has forums on and you can meet lots and lots of fmailies on there who would love to hear from you.
Lots of love to you xxxx


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## JellyBeann

:hugs:


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## TupeloHoney

My sister will be six in February. She is happy, healthy, and also has Down Syndrome. She's a bit small for her age, is delayed in motor and social skills, receives speech therapy, but otherwise is just like any other child. She's in kindergarten now, and believe it or not, her teachers have reported that her reading comprehension is above that of many of her TYPICAL peers! It's amazing - she actually sounds words out, even if she doesn't know them. Hannah is now fully potty-trained and seldom wets the bed (but at age five, what kid doesn't have the occasional accident?) She can be rather immature, but is very empathetic when she realises she has hurt somebody's feelings. She's very loveable, too, as are most kids with DS. She likes watching Max & Ruby, eating spaghetti, and playing on our father's drum-kit downstairs. She gets colds often, but has no heart problems. Considering, we couldn't be happier!


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## dellamaria

Hi :) I have a soon to be 5 year old girl who has DS. She can be a little monster at times but that's true of any child. If you need anybody to talk to feel free to contact me x


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## luckybreak

Somebody here in the boards posted this wonderful blog about a mom who had no idea she was having a child with down syndrome, there are soo many photos of the birth of the baby that you can actually see her reaction and how confused and hurt she was..this is her birth story then you can you check her entire blog with update photos of her baby girl they are gorgeous!! https://www.kellehampton.com/2010/01/nella-cordelia-birth-story.html


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## mmmsrb

it's definitely a hard thing to go through love, but you'll find peace and loads of happiness. you'll be an amazing mother ! 

www.xanga.com/annaeden


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## Torsornin

hi - I have no personal experience of this but there is a lovely book called Expecting Adam by Martha Beck that you may enjoy - it was about her journey through her pregnancy and some of life after baby. She found that her child has downs syndrome too. It is a really heart warming book. and a lovely read.... 

:hugs::hugs::hugs::hugs:


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## calm

No personal experience, but there has been some really enlightening and warming answers from other ladies. Sorry for what you are going through, it must be so so hard :hugs:


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## Midnight_Fairy

How are you? xx


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## scoobymum

Hi, just wanted to send :hugs:

I noticed this article earlier and it made me think of your post. I thought it was a lovely story. I've worked with many children with DS (I know it's not the same) and this story made me smile x

https://www.dailymail.co.uk/femail/...-Taya-born-Downs-darling-modelling-world.html


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## Novabomb

Let us know how your scan goes I sorry you are going through this :hugs:


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## Chelsea.ann1

I don't personally have experience with a downs child, but a close friend of mine just had her beautiful daughter, Lillyanna... Whose got down syndrome...

She's the most precious thing in this world... I feel so lucky for them.. As each milestone gets to be a big one!!! and they get to experience so many wonderful things that most other parents don't... not only that they get to develop a different sort of appreciation for life... that itself is what i long for...

Down syndrome i don't believe will change a thing.. certain things may be harder.. more dr. visits but still a gorgeous child who you get to lovvvveee with all your heart endlessly and unconditionally and a love you will forever recieve in return. 

I'm very happy for you, and very happy that you don't think it's wrong he's got ds. It's not. 

Congratulations! Hope your scan goes well!

xxx


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