anyone with experience of breastfeeding a baby with downs syndrome??

[daisybo]

i have a close friend whose baby is 3 weeks old and has been diagnosed with downs. she is currently expressing as prob with her dd's tongue means she can't get milk from the breast effectively.
however, she is really keen to get the baby to start taking milk from her, does anyone have any experience of this, or have any tips? i'd love to be able to help her with this.
(baby was prem as well and only 3lbs 10oz, so obviously she is concerned about weight gain too)
will post this in breastfeeding too to see if tiktok has any advice!
thanks in advance

I thinke idsvold, geegirl and thomcat all breastfed their lovely girls

I suggest she contacts the La Leche League. They might be able to put her in contact with someone who has breastfed a baby with Downs. A breastfeeding councellor might be able to help her get the baby to latch on without pain.

Anyway congratulations to your friend on the birth of her baby.

I breastfed my DD3 who has DS until she was nearly 2. I spent the first 2 weeks expressing and cup feeding, took her home, then she was readmitted to hospital with pneumonia, so spent a week as an inpatient, where she was tube fed expressed breast milk. Towards the end of that week she suddenly improved, got the hang of it, and we didn't look back. So, considerably more difficult than feeding DD1 and DD2, and I believe the weight charts for DS children take into account feeding difficulties in the first month. I would echo the advice of RT to speak to a counsellor, and also to keep expressing to keep her supply going until the little one gets the hang of it - which she WILL. Wish her luck xx

thanks, RT and THG
she is struggling at the mo, expressing every 3-4 hrs and giving ebm in a bottle cos her dd won't latch on properly. she's keen to start replacing a bottle feed with a breastfeed but very worried about weight gain as dd is so small, and lost a lot of weight in first week or 2, so naturally she is worried that when dd is breastfeeding she's not getting enough milk.
think it has something to do with her daughters tongue being close to the top of her mouth, and sucking reflex not very strong, not really sure how to best help her get the baby to her breast.
she is doing so blimmin well as she has been back in hospital this week to have retained placenta removed under a general anaesthetic, so having a tough time, bless her
any more advice would be most welcome

daisy if you want to CAT me, I'd be happy to email or speak to your friend. My DD3 is 6 now, but I remember those first weeks well. Not sure about current advice these days re BF, but it might be worth thinking about a cup instead of a bottle so as not to get LO confused over diferent sucking techniques. My dd3 lapped from a cup quite effectively but it is time consuming when you're expressing also. Other family members can give the milk via cup though. Also, relax, (really makes a difference when feeding and expressing) and easy to say but don't get too hung up on weight for first 4-6 weeks. its common for a baby with downs to be sleepy in first few weeks - the main thing is that she's not getting dehydrated.

I did not breastfeed dd1 for lost of reasons - I expressed and tube fed her for 8 weeks or so until my milk just gave up.

I do know of mums who have used nipple shields with great success.

There is also a booklet you can get from here - a friend sent one to me when I had dd1.

You could also perhaps contact the down syndrome association in the UK - they should have resources or know where she can get help from.

booklet you can order online from here Aus shop but sends overseas.

Yes i managed to b/f my dd (who has Down syndrome) until she was 21mths when she self weaned.

You are welcome to email me off forum sharonkitten @ gmail.com (remove the spaces)

also look at
www.breastfeeding.asn.au/bfinfo/down.html
www.lalecheleague.org/FAQ/down.html

Sharon x