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Original poster

32 weeks pregnant and given high risk of baby having down syndrome advice please

33 replies

razorlight · 11/09/2007 19:15

hiya everyone, i am 32 weeks pregnant with my 4th baby, i am 30 years old and was given a 1/140 risk of down syndrome after my triple blood test - which i got back at 22 weeks. i refused to have an amnio because it would back no difference to me and i could never even consider a termination. I would like some advice from mums who have children with down syndrome - if your child's condition was not diognosed before birth - how soon did it become apparent? did your baby look so different that you would not know without a blood test? or was the syndrome obvious from word go? did your baby get taken away straight after the birth to special care? (i'm guessing this is dependent on each individual case, heart defects etc?) also i would like to chat to anyone who has breast fed a baby with down syndrome - i have heard that this is hard to do? Any advice would be a great help, thanks!

OP posts:
RnB · 11/09/2007 19:16

Message withdrawn

Original poster
razorlight · 11/09/2007 19:24

rnb - yes i am fine, thankyou!

OP posts:
WanderingTrolley · 11/09/2007 19:32

Thomcat and Eidsvold write beautifully about their dds who have Down's Syndrome.

Try a search?

Thomcat aka TeeCee.

Graciefer · 11/09/2007 20:34

Hi Razorlight, my wife gave birth to our second son on Friday night, he has Downs Syndrome.

There was no diagnosis before birth and we too refused any tests as we felt they would be irrelevant, in hindsight though we totally overlooked the benefits of being prepared (both mentally and practically).

Both myself and my wife knew straight away and the blood test is just a formality. Our son wasn't taken away straight away, but did go to the transition ward about 1.5 hours after he was born.

This was because of the various tests they wanted to do and to give his mother extra support. They also offered her a private room, so she wouldn't get upset by all the other babies , which we refused.

So far they have tested his blood for various things, his heart and his kidneys. He was also born with bilateral talipes, so is getting Orthopedic input. Because of his talipes we were told today they also want to scan his hips.

My wife breast fed our first son, but this one has found it more difficult. This seems to be down to his lack of muscle tone and co-ordination difficulties. We have now decided to bottle feed him as it is his feeding that is keeping him in hospital, we have to keep accurate measurements of how much he is taking and tube feed him to make up any short fall.

My wife still breast feeds once in the evening, to help with bonding and it also helps reduce any pain for her.

Every child is different, but this is our experiences after 5 days.

He is a real handsome devil even if I say so myself:

Picture 1
Picture 2

His hair is even more cute, now they finally let us bath him today, but digi camera is still in hospital with his mother.

Hope some of this helps.

Mr Graciefer

lionheart · 11/09/2007 20:51

Congratulations to you both, Mr Graciefer. What a sweetie.

2shoes · 11/09/2007 21:00

mr Graciefer congratulations he is beautiful.

WanderingTrolley · 11/09/2007 21:03

Gorgeous baby.

Congratulations!

louweasel · 11/09/2007 21:47

Wanted to add my congratulations - your new son is such a cutie with all that hair. And your post is so heart warming to read - with your pleasure and pride in your new born son.

katepol · 11/09/2007 22:01

Graciefer
Just wandered in on this thread. Congratulations on your son - he is VERY cute! Your photos made me smile

kindersurprise · 11/09/2007 22:28

Congratulations to the Graciefer family, what a beautiful boy. Your post is so moving and full of pride, just lovely.

2mum · 11/09/2007 23:31

Congatulations graciefer and family. Hes a bonny little lad

chipmonkey · 11/09/2007 23:37

Congratulations, Graciefer and Mr Graciefer. Your son is beautiful!

chipmonkey · 11/09/2007 23:38

BTW I'm sure Thomcat breastfed Lottie?

Original poster
razorlight · 12/09/2007 09:27

thankyou mr graciefer what you said was helpful, and your little boy is gorgeous!

OP posts:
geekgirl · 12/09/2007 09:37

hi razorlight, my dd2 has DS - it was diagnosed after birth - bit of a long story: she was born at home and all seemed fine. 30 minutes later I went into physiological shock and had to be transferred to hospital. My midwife had a 'hunch' that dd2 might have DS when she saw her, but didnt want to unduly alarm me so asked the paediatrician on the labour ward quietly for his opinion. He examined dd2 and gave her a clean bill of health.
We went home later that day and dd2 turned out to be a bit of a poor feeder - by the next morning she still hadn't fed properly, so they midwife told me of her suspicions and we went back to the hospital to be seen by two paeds on the postnatal ward. They also didn't think dd2 had DS or any other health problems, but agreed to do a blood test to get my midwife off their backs. The test came back positive 4 days later.
So, what I am trying to say here in a rather long-winded way is that dd2 didn't really look any different from other newborn babies. There's a picture of her at 1 day old in my profile, have a look.
Dd2 also turned out to have a severe heart defect - she had no separating wall between the two main chambers of heart - but she was never in SCBU as a newborn, always home with me. I breastfed her - that did take some perseverance - but it got easier once she had recovered from her open heart surgery (she had surgery at 7 weeks), and she carried on bf until she was 15 months old.

She is a happy and totally healthy (heart as good as a normal one) 6 year old now - she attends the local village school together with dd1.

theheadgirl · 12/09/2007 09:40

Hi Razorlight, my DD3 has DS. My blood test showed a 1 in 90 chance, and I decided against amnio. I could tell soon after birth that she had DS, I think because I was looking for the signs if you know what I mean.
Shes now almost 7 and an absolute joy. Has a brilliant sense of humour. Thankfully she has no cardiac problems, her main problem is that at age 3-4 she was found to also have ASD. This has meant she has not yet begun to speak, and her learning difficult is classed as severe. However she is at a wonderful special school, and is making good progress with MAKATON signs and PECS (picture exchange)
And what else can I tell you? just that its fine, I wouldn't change her for the world!
Good luck xx

theheadgirl · 12/09/2007 09:46

geekgirl - we crossed posts! I often see your name on these boards, our girls must be similar ages. Blimey what a drama you had with her diagnosis!! Do you remember a news story in 2000 about Sheffield hospitals cocking up their DS risk factors in blood tests? I was effected by that - intially told triple test was OK but called back within the week for a retest which came up with the 1 in 90 result. I was offered a fast track amnio results later that day! I declined, as I was 20 week pregnant and knew I was having a gal called Isabel. An extra chromosome wasn't the end of the world. And I was right!
Razorlight - I also breastfed DD3 until about 20month. She was a very smiley "easy" baby.

Original poster
razorlight · 12/09/2007 09:57

thanks guys, your children all look lovely! Do you happen to know what percentage of heart defects in babies with DS are picked up on the 20 week scan? My scan didn't show and "hard or soft markers". i think i am most worried that my baby would have a heart problem due to DS rather than worrying about the DS in itself.

OP posts:
geekgirl · 12/09/2007 10:03

I don't know - there is the Down's Heart Group charity, they might know. IIRC, one in 4 babies with DS will have a heart defect, and another 1 in 3 of those will need surgery... but on the up side, the heart defects common in babies with DS can usually be safely and fully repaired.

Theheadgirl, I always love looking at those smiley pictures of your dd she's a sweetie.

Dinosaur · 12/09/2007 20:50

mr graciefer - my DS2 was born with bilateral talipes - I have sent a Contact Another Talker msg to graciefer

all the best to you - your ds is very cute

Graciefer · 12/09/2007 20:58

Hi Dinosaur,

Thank you very much for that, I am a bit of a MN rookie and Grace is still in hospital.

We don't seem to have received anything and I notice that Grace had 'Receive C-A-T messages from other users' set to No, I take it this is the default option.

Anyways if this is the problem, I have now set this to allow C-A-T messages. If you wouldn't mind resending that would be great.

Thanks again.

Mr Graciefer

Dinosaur · 12/09/2007 21:15

I will send another one. However you probably won't receive the email from mumsnet telling you about it until tomorrow, as obviously we are outside of working hours now.

Please give my best wishes to Grace.

Dinosaur · 12/09/2007 21:19

Okay, another CAT sent! Look forward to hearing from you or Grace. Pls don't worry about the talipes, it is a bit of a pain but relatively easy to sort.

Graciefer · 12/09/2007 21:31

Thanks very much, we are keeping positive about it, just a bit disappointed that it will hamper my swimming plans with him for a while.

Thanks for the best wishes for Grace, I will pass them on when I see her tomorrow morning and no doubt she will contact you as soon as they are both home and settled.

Thanks once again.

Dinosaur · 12/09/2007 21:59

My understanding is that they do the plaster casting stage pretty quickly these days, and once he has his boots and bar it will I am sure be okay to take them off for a short time for swimming. So I hope it won't delay him becoming a water baby for too long!