If you have a DC with Down Syndrome...

[RememberToPlaywiththeKids]

I'm in my 3rd trimester with a baby that almost certainly has DS.

I understand that it isn't always obvious at birth - how and when do you find out and when do the characteristic facial features become more apparent?

If there are difficulties breast feeding, is it apparent straight away or do they just not put on weight and you discover later that things aren't going so well?

Hi there

Have you had an amnio or cvs? If not, they'll arrange a chromosome test at birth which will double check the diagnosis. The physical features are usually apparent at birth, but newborns are often a bit squished from vaginal delivery, so I wouldn't put too much store by initial appearances for any child!

For breastfeeding, the most important factor is the baby's general health, so a little one with additional problems like heart trouble or gullet issues would have more trouble. Some problems would be apparent immediately, others might evolve later, and some babies will feed without difficulties. Babies with Down syndrome often have low muscle tone and can be sleepy, like a premature baby. So the key to success would very good generic breastfeeding support, and it's worth investigating what's available in your area now.

Consider investing now in a quality breast pump, because if there are suckling problems, you can express and keep up your supply. The ameda lactaline (in the NCT catalogue) is good; it's electric/battery, so less wrist strain and you can pump both sides at once, which is great for supply. And it'll protect your LO from well-meaning professional attempts to give formula.

I'm no good at doing links (though I'll try), but the la leche league site and kellymom both have good pages about BF with Down syndrome. Even more importantly, they have a wealth of information about successful breastfeeding, and how to overcome common problems. I'd also recommend a lovely book called 'Bestfeeding'.

www.llli.org/FAQ/down.html
www.kellymom.com/babyconcerns/down-syndrome.html

PS I don't mean to hijack your thread.. my dc has other problems and not DS but I'm a breastfeeding bore.

Hi, for me they found out a few hours after birth that my son had a heart condition, then they found he was down's. A blood test is all it takes. HTH x

thank you both. Devient - how old was he when you noticed the typical facial features developing?

My DS is mine through adoption but I can clearly see the facial features od Downs Syndrome evident in his picture from the maternity hospital.

A blood test will be conclusive though. Is there's something worrying you about "not being sure" when your child is born? Or being left with doubts? If so, it might be worth talking to your doctor or midwife so they can tell you exactly what procedure they will follow to test for Downs Syndrome if there are any concerns.

Hope everything goes well for you.

www.llli.org/FAQ/down.html
.html
hopefully for marg

sorry that should of been maria

hi Remember,
although some features were there from birth, the 1st few year he was such a gorgeous baby/little boy..........he still is even though some days look worse than others.
A little tip, that I done was, every time his tongue was hanging out his mouth, I tapped it and said tongue away, now nearly 10 year on, I just say tongue away and in it pops, making him look so much better. There is days however where it is beneficial for him to sit with his tongue out, e.g when he's ill. Hope this doesn't sound too patronising.

Hi Remember, I think we have "spoken" before. In my case I saw something fleeting in my sons face that made me suspect Downs. I mentioned to midwife, she checked and wasn't sure, got another two midwives and they then said they were going to ask a doctor to look at him. We knew then it was likely he did have it. it was confirmed with a blood test, we got those results a week later. He had a palmar crease, a 'sandal gap' and was very floppy which is what led to the diagnosis before the blood test results iyswim. He doesn't particularly at the moment have the facial features, eg his eyes only look "downs-ish" when he us asleep.

I think you need to think about what you want to happen in the delivery suite, do you want to look at your baby first or do you want them assessed immediately.

If you want to pm me I'm happy to talk

We use the "tongue in" thing as suggested above!

Thank you for that link Devient - that's really useful and I didn't know about the 'tongue thing' - what a good idea - I assume it encourages nose breathing rather than mouth which is better for getting less colds and things too?

Beach holiday - it's hard to explain - I think I don't want to see him and think that he doesn't have down syndrome and then be told a week later that he does. Not that it makes any difference either. Female logic on my part I'm afraid!

Eliza - yes thank you! How old is your DS now? My Ds (without DS) actually has a sandal gap like DH (also without DS) so that won't tell us much. We had a 4D scan a couple of weeks ago (as with the other DC) and I know you can't tell from scans but there was def more than one palmar crease, no sandal gap and ears etc all looked 'unremarkable' i think the phrase is! I only have the odd random question at the mo but suspect that I will have more after the birth and would love to PM you then if that's still ok.

It sounds like I'm willing him not to have DS - I'm actually fine either way and still assumer he does as he has a minor heart defect too. I think I just want to know at birth ideally but know that it's not always apparent so I was wondering when it does become apparent.

Hi remember, thats good to know about your dc minor heart defect. My son has a major heart defect and nothing was picked up on a scan.
I would let the docs know you need to know at birth RE DS. They may do the blood test to ease your mind. hth x

yes we're really pleased to know and the chap said that it was only because baby was in exactly the right position that they managed to pick it up at all. I was kind of expecting it anyway as there were soft markers for DS at thhe 12 week scan.

That must have been a terrible shock for you to find out afterwards - was it just from the routine listening to his chest at birth or did he have symptoms?

No, he was very chesty and mu hubby kept saying there was something wrong with his chest. Then we went to the ward, I was going to bottle feed him and the midwife offered while I slept. (I had been up the previous day from about 5ish, went into labour on the way to bed, had him at 4am with no pain relief at all) So by now it was about 6ish again. By 7am she was back with a photo of him saying he stopped breathing when he went to suck, needed resucitated a few times until they found out about his heart. Apparantly the heart condition he has usually as soon as the umbilical cord is cut they don't breathe for themselves, so a true fighter lol He was also very blue, (I have the pic on facebook, to help save special care), breathing difficulties etc.
Hope this isn't off putting, it's not about me, I was just trying to say that it was good you found out. Hope you are well. I was sick from morning till night and ended up on a drip to feed me as he was taking all my nutrients lol. If there is anything else you want to know just ask x

My DD was diagnosed with DS at 2 weeks old. They suspected something as soon as she was born because there was an abnormality with the umbilical cord (which was never picked up on any scans), she only weighed 5lbs7 (full term) and she was very 'floppy'; they also established that she had congenital cataracts when she was about 30mins old. So straight away the doctors came to examine her and take blood for a chromosomal test, but she had none of the other physical characteristics - She had a perfectly rounded little head, her tongue was always in her mouth, big ROUND, wide eyes etc. She didn't look like she had Down's at all - she did/does have a sandal gap though! While we were waiting for the results of the test (we had to wait a fortnight) I started to notice certain features when she pulled particular facial expressions, but it was only ever very fleeting and I wasn't sure if it was my imagination or not. I told my DP that I thought I could see Downs features in her but he couldn't see it. After a short time, maybe 3-4 months or so, she started sticking her tongue out a lot, her eyes became more almond shaped etc. but I do think it was still only obvious to people who actually knew. She's 16 month's old now and the majority of the time she's you're typical, beautiful, angel-faced down's baby! But I do still find people staring with that 'does she or doesn't she' look on their faces, obviously VERY few people actually ever ask! I can't say exactly when it happened but I know for a quite a few months she didn't look like she had DS at all, but all babies are different, and with some babies with Down's the physical features are very apparent from birth.
As far as breast-feeding was concerned, DD took to it quite well, but not without a few issues. The problem was, due to having low muscle tone, she struggled to stay latched on as she just wasn't strong enough. She could latch on quite easily, but only for a couple of seconds and then she'd fall off. So I used a nipple shield and it was brilliant, it meant that she didn't have to 'latch' she just had to suck like she would with a bottle. She used it for a couple of months then I weaned her off it and eventually when she was strong enough she could just latch on to my actual nipple instead like any other baby. It made the transition from breast to bottle easy too!

Hope this helps x

Devient that all sounds really stressful. Can I ask what the heart condition was and how is he now? The cardiologist for our LO has said that there shouldn't be any issues at birth and he's even fine for us to have a home birth provided everything else looks ok on the scan at 35 weeks. I was amazed.

Taysh - thank you for your post too - that's really helpful and a good tip about the nipple shields - did you use them almost straight away and was one particular brand better? Can I ask what it was about the umbilical cord? Would you say that she definitely does look like she has DS now? Did / does she have any cardiac issues?

You say she was very floppy - did you feel much strong movement when you were pregnant with her or was it 'as normal'?

Sorry for all my short blunt questions!

Taysh sorry one more thing - why did you have to wait a fortnight for the results? That must have been really hard for you.

Hi Remember, just to chip in, my DS had really strong movements in the womb. Much more do than my first child. Were you offered an amnio or cvs to give you a definiative answer? Are you on facebook? If you would like to Pm me and then friend me you could look at the photos of my son and see how he looks. What is it about the facial features that's concerning you?

Don't worry ask as much as you want!

She was a right little wriggler in the womb, never stopped! To be honest when she was born and they said she was 'floppy' I couldn't see what they meant, aren't all newborn babies floppy?! It was only as she got bigger, and I realised she wasn't strong enough to lift her head and do other things that babies her age were doing that I actually noticed.

The nipple shield was provided to me by the breast feeding specialist on the maternity ward, but I'm fairly sure you could buy them online. I could look into it for you if you want.

She doesn't have any cardiac issues, thankfully. She had a small hole in her heart (same as most babies) called a patent foramen ovale which they monitored very closely at first in case it actually got bigger, but instead it gradually started closing and now it's almost completely closed.

As for the umbilical cord, when she was born the surgeon (I had to have a c-section as she was breech) found that the umbilical cord only had 1 artery and 1 vein, as oppose to the usual 2 arteries and 1 vein. It's called SUA and is fairly unusual (I think) which is why they picked up on it. I don't think there's any direct link with Down's Syndrome though, I think it was just one of DD's specific symptoms if you know what I mean. E.g. she doesn't have cardiac issues or any audiology issues, but she had SUA and was born with congenital cataracts. Just as all babies in general are different, all Down's babies are different too.

We had to wait so long for the results because the hospital were incompetent!! Well, that and that they did 2 tests, the rapid test (which came back all clear - because they didn't test for Down's as they didn't think she had it because she had none of the physical features) and then the cultured tests which is where (I think) they culture and grow the chromosomes (sorry, I'm no scientist!) and that's when they confirmed she was Down's. But she's quite an interesting case as she doesn't have Trisomy 21 DS, she has translocation DS. Which means the chromosomes form a different pattern, and neither DP or I are the carrier of the gene. So basically, it was an accident of nature!

As far as your question about whether she looks like she has DS or not, it's really difficult to say. I think she does, but then I know she does. For people that don't know she has it I don't think it's that obvious yet. But if I'm honest with you, the older she gets, the more the physical features are becoming apparent. She's quite young still, but it is becoming more and more obvious.

Sorry about the long answers, but I don't want to miss anything out! Hope it helps x

Oh and yes, I started using the nipple shield within the first 1 or 2 days or so when we realised that she couldn't do it properly. Most babies might struggle to actually latch on in the first place, where as DD could do that, she just couldn't stay on, so the midwife suggested the shield and it was brilliant.

oh that's great thank you - can you remember what brand the nipple shields were? or doesn't it matter - are they all much the same? I've never used them before - do you just stick them on you and baby on them and that's it??

That's great going for a home birth. My friend had 3 of hers at home, though not by choice. Within minutes of her waters breaking they would be there lol.
His heart condition is tetraology of fallot, he has ops to alieviate the symptons though it can't be corrected. TBH his heart isn't his main issues now, though he will need future surgery around 15 yo. He is monitored regularly.

Agree totally with Tay, "all babies in general are different, all Down's babies are different too."
Eliza feel free to add me and look at my pics, Tracy "splat" davis. There is a large community of us on there. Feel free to join Tay and remember x

Hello Remember (and hello Dev!)
I remember reading your earlier threads - can't believe how time has flown! I knew my ds had ds within moments of looking at him. He just looked so different from my other children at birth - but I know it was only because I asked that the midwife then mentioned that she had already asked for a consultant to come and have a look at him. It took about a few days for the blood results and even though we knew really, we still would spend hours looking at him and trying to convince ourselves otherwise. I am sure the consultant on shift at the time will be able to reassure you one way or the other.
Good for you on the home birth - my ds was definately the best birth of all and there were no health worries once born so hopefully that will be the same for you. Good Luck!

Hi again. It's worth calling the community midwives and asking them to put you in touch with the breastfeeding specialist if you're thinking of nipple shields. Some types of latching on or supply problems can be made worse by them. Also, there are lots of different ones cos all babies mouths and mummies nipples are different.

Hi Remember - my DD has down's which was detected at birth, like the rest have said it is usually fairly apparent in their features and a blood test soon after confirmed it.

We were warned about feeding problems when she was born & in fairness she wasn't able to breastfeed, but I think that was more to do with the fact that we were separated at birth for about 12 hrs, as she was born by emergency c-section and we both needed to go to ICU to recover, rather than her muscle tone. We tried the breastfeeding counsellors that have been suggested here, but in the end because of her heart problems she needed to be put on special formula by the hospital to maintain her weight for the first month. I think I probably obsessed a little too much during the first few weeks about the importance of her breastfeeding, but in the end I figured it was far more important that she feed on something.

If you need down the formula route, then we found that NUK bottles (which they sell in Boots) were really easy for her to use, as they have a specially designed teat that don't need quite as much suction for the milk to be delivered.

8 months on and she's happy, healthy & has no problems eating. Her tone was relatively poor for the first few weeks, but it has really improved and she's now fully weaned and able to eat like any other 'normal' child.

HTH & good luck with the birth! x

My niece has DS, it was known to be a possibility and confirmed after birth by blood tests but in her case it was fairly obvious immediately as she did have classic DS features.

I don't know whether you've seen this birth story before, heartbreaking but beautiful, but again immediately obvious DS features.