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SN children

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Original poster

If you have a DC with Down Syndrome...

47 replies

RememberToPlaywiththeKids · 26/12/2010 21:05

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?

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Original poster

RememberToPlaywiththeKids · 29/12/2010 21:47

Gosh lots of posts - thank you everybody - this is all really helpful for me and I do appreciate you putting the time in to reply.

Incidently - did any of you have any issues at birth that were specifically related to DS that I might want to consider when making the final decision about a home birth?

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Eliza70 · 30/12/2010 00:41

No issues at all. Very straightforward birth. Sweep done in the afternoon, laboured at home, went to hospital at midnight, baby born 50 minutes later. I was formula feeding which went fine and we were discharged a few days later, he was born early Wednesday and we went home on the Friday.

Original poster

RememberToPlaywiththeKids · 30/12/2010 07:49

oh that's good to hear - can i ask why you were kept in so long?

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Eliza70 · 30/12/2010 09:38

I had previously tested positive fir group b strep so he had to have a course of antibiotics. Nothing to do with his Downs, I always knew we would be in that long. They were supposed to give them to je but he was born too fast!

proudmum74 · 30/12/2010 11:13

Hi - no specific problems due to the downs, my problems were all due to my idiot midwife not believing me when I said the baby had flicked and was in the breech position or even that I was actually in labour, but then it was fairly obvious all along that she didn't know what she was talking about!!! so as long as you're comfortable with your midwife then a home birth should be viable. The only lthing that you might want to talk to your doctor about is that Down's babies can sometimes have problems regulating their body temperatures, so my little one needed to be in a heated cot for the first 5 days.

mariagoretti · 30/12/2010 17:18

There's a lovely book called kangaroo babies about using a sling on the mother's own chest as an incubator if a newborn needs some extra care.

FnD · 30/12/2010 20:20

Hi again
my baby also was a little cold for his first few hours - nothing major just needed another blanket and a hat!

Taysh1109 · 30/12/2010 22:08

My C-section was perfectly straight forward. It was planned as she was sat in such a strange position, the doctors said it would be practically impossible for a natural birth. So initially the were going to try and turn her, but they soon established she was very small so the doctor said she wouldn't want to risk it as it's quite traumatic for both baby and mummy. So I had a c-section and everything was fine, although same as FnD, DD was a little cold for the first few hours as she was so tiny, so needed lots of blankets and skin to skin contact :)
I did have to stay in for a while but that was just because I'd had a section and I had a postpartum hemorrhage whilst in recovery, (nothing to do with DD though) and I needed a blood transfusion. Other than that I would highly recommend a section, no pushing and screaming and the scar is practically invisible now genius! xxx

Original poster

RememberToPlaywiththeKids · 01/01/2011 12:35

That all sounds very reassuring. I have a heated pad thing that we can use if needs be and also blankets if course. I will need to take baby in to be reviewed anyway so. Wouldn't be at home for very long at all.

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sandycat · 01/01/2011 14:19

Hello. My baby was born with Down's syndrome eight months ago, I didn't know when I was pregnant. As other posters have said, I picked up that there was something different facially with him compared to my other children and a blood test confirmed this 5 days later. He has the sandle toe gap but not the single crease on his palm. As others have said, he was quite cold for the first week or so and needed wrapping up warm.

I also needed to use nipple shields with him but managed to breastfeed successfully.

If you end up in hospital and they put you on the ward, it may be worthwhile asking for a side room. I did this as I had lots more medical staff coming to talk to me and I felt more comfortable talking to them in private. Although Ds had no problems with feeding, as it is a common problem with Down's the neo natal staff did keep checking on him and I seemed to have several more visitors a day than the other mums.

In the hospital they checked DS for any heart problems with a stethoscope but none were detected. We were sent to the cardiology dept of a another hospital where they did pick up a small hole which is now being monitored, but doesn't restrict DS at all.

Original poster

RememberToPlaywiththeKids · 02/01/2011 07:33

Hi Sandycat - congratulations!
Can I ask which nipple shields you used and how soon after birth and were they something you tried yourself or was it a breast feeding specialist at the hospital who suggested them?

I'm seriously considering getting some incase there's a gap between being able to see someone professional and the hospital getting nervous because he isn't feeding and start threatening a bottle before I've had a chance to try and breast feed.

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realisticdevientenigma · 02/01/2011 09:58

Hi remember, (and FnD)
The floppiness is to do with hypotonia and possibly hypermobility. Majority of downs have hypotonia to some degree. This will affect the control of the body. It will determine when and how the child will hold his own head, roll, crawl, walk, run etc. It's partly due to the hypotonia why downs can be delayed gross and fine motor. Apologies if this does not make sense, someone may be able to word it better, or google it x

sandycat · 02/01/2011 22:52

Hi Remember. Sorry I haven't had time to log on today until now. I started to feel sore about two days after he was born. Told the midwives who showed me how to express in the hope that ds would be more comfortable. I think they though he was struggling to feed as I was very full of milk, and if he was more comfortable he would latch on better. However, the problem got progressively worse and after two days at home (ds about 5 days old) the pain was unbearable. I was also using some cream from midwife, but was so sore that it didn't really help. So I sent dh out to local chemist to get some shields. He came back with some Avent ones. I thought they looked huge and wouldn't work but they were brilliant when ds next needed feeding. It still hurt a bit as I was VERY sore, but after a few days things had healed. I used them for a few more days and by that time ds seemed to have developed a better technique and I was able to stop using them. I am still breast feeding now, but do not think I could have continued without the nipple shields.

Going off on a bit of a tangent, someone I know who also has a child with Down's had problems breastfeeding. She thought she was doing ok for a few days but baby was losing weight. It turned out that the baby was putting his tongue over the nipple and whilst he appeared to be suckling well, nothing much was happening. I think she was able to rectify this with the help of her midwife. She said she was told this sometimes happens as babies with Down's can have problems associated with the tongue's tendency to protrude. Sorry if I have waffled a bit but I wouldn't want this to happen to you.

Original poster

RememberToPlaywiththeKids · 03/01/2011 09:43

That's really helpful - thank you for all that! I wish I'd thought about shields with my last two as I found feeding SO painful for about 2 weeks - I think i will just get some anyway! I'll keep an eye out on the tongue too. Good tip.

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sandycat · 03/01/2011 20:38

Yes might be best to get some if its been a problem before. Best wishes for the birth!

realisticdevientenigma · 03/01/2011 22:04

Could be so wrong here. Can downs have a problem with sucking?? Something's niggling that in the past this is the case, as they have problems with straws etc. May not be all. Or it may be from the heart point of view. My son was tube fed as a baby.

Original poster

RememberToPlaywiththeKids · 04/01/2011 07:54

Lots of babies with heart defects do have trouble feeding as they tire very easily so yes it could be that. Was your baby born with a heart defect?

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Original poster

RememberToPlaywiththeKids · 04/01/2011 07:55

aaaagh sorry just realised it's you!

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eidsvold · 04/01/2011 10:37

As they suspected my dd1 had ds - they looked for the physical markers straight away and then sent away a blood sample for karotyping.

As to feeding - my dd1 had a heart defect which meant she really had little or no energy to feed and was tube fed for the first 8 weeks of her life. After that my milk had never really come in and so we formula fed - however I know lots of mums with little ones with ds who breastfed.

If you google australian breast feeding association - they have a fabulous booklet you can purchase with strategies and helpful ideas around the topic of breastfeeding a little one with ds.

eidsvold · 04/01/2011 10:38

also - depending on where the baby is born - if ds is suspected or in fact diagnosed - a lot of hospitals have a protocol they go through prior to discharge - one of which is that the baby has an echo to check for heart defects/conditions.

realisticdevientenigma · 04/01/2011 10:44

can I ask eids, how old your dd is? When my ds was dx it was finding the heart condition which led to his dx of DS. At the time the hospital were not that proactive.

eidsvold · 05/01/2011 08:26

my dd1 is almost 8 1/2. Her hospital may have been a tad ahead of its time We already had her cardiac condition diagnosed in utero and in the first couple of weeks of her life - they did do another echo and ecg to confirm the extent of the condition. So we had already had the check done. They did the karotyping and we were hooked up with community nursing staff and social workers and all sorts of other people prior to dd1 being discharged. She was in hospital for 3 weeks when she was born so there was plenty of time for this to be in place.

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