Resources on bf a baby with Downs Syndrome?

[MommyJogger]

Posted in bf forums without much response so far, sorry for cross posting.
Has anyone done this before or does anyone know of any very thorough resources on breastfeeding a baby with Downs? We've just been given some pretty heavy odds for DS2 (96% chance) and I've been trying to be prepared for the worst case scenario, but both lactation consultants I've spoken to aren't very supportive or knowledgeable. I've got a book coming on loan from LLLI, but I'm really interested in hearing first hand experiences and practical management and I'm not sure the book actually has much of anything beyond a description of typical problems we'll run into. It's my understanding that in many cases, I'll end up needing to pump and bottle feed. If that's true, I'd really like to find a middle ground between pumping and feeding at the breast to help promote jaw musculature. The support group in my area doesn't actually have anyone who breastfed/expressed beyond a few feeds. TIA!

 

[aliss]

Hi mommyjogger, congrats on #2. Have you looked around for DS support groups yet? I found support groups to be invaluable. Professionals are good, but there is nothing like an experienced mom who has done it.

Dr. Sears 8th child has down syndrome, his wife/lactation consultant Martha breastfed him and they have a lot of material online about how to breastfeed special needs children. I would start with his website, and their special needs book.

 

[kit10grl]

Posted in bf forums without much response so far, sorry for cross posting.
Has anyone done this before or does anyone know of any very thorough resources on breastfeeding a baby with Downs? We've just been given some pretty heavy odds for DS2 (96% chance) and I've been trying to be prepared for the worst case scenario, but both lactation consultants I've spoken to aren't very supportive or knowledgeable. I've got a book coming on loan from LLLI, but I'm really interested in hearing first hand experiences and practical management and I'm not sure the book actually has much of anything beyond a description of typical problems we'll run into. It's my understanding that in many cases, I'll end up needing to pump and bottle feed. If that's true, I'd really like to find a middle ground between pumping and feeding at the breast to help promote jaw musculature. The support group in my area doesn't actually have anyone who breastfed/expressed beyond a few feeds. TIA!

I dont have any info right now but my friend found that when her twins were born she got little support from the midwives with breastfeeding and ended up FF as a result. she was upset later to find out it is possible and dependent upon the individual baby being able, I have asked her if she knows of any good places for info and will let you know what she says when she gets back to me.






ETA: I spoke to my friend and she gave me this link https://oakwellbarns.co.uk/?page_id=503 saying there are loads of good links on there. She also spoke to someone in her DS support group who is still currently feeding her 1 year old who said she would be happy to chat to you and give you a good real life perspective. I will pm you her details.

My friend also said it turned out the only reason her boys couldnt breastfeed was that they had tounge tie. If she had been given proper support at birth this could have been cut and her boys could have been breastfed but at the time she was dealing with the boys diagnosis and wasnt really in a position to demand more attention from the midwives.

 

[ninjette_mom]

one thing that really helped me were nipple guards (they reminded my son of a bottle). he refused to latch without them (and sometimes with them) and it was a lot of pumping. i also bought the nukes that are like a mothers nipple. i did the best i could for the first month, then little by little i had to start switching to formula (no supply no demand). but in the end i made it to mostly 3 months of breast feeding (wish i could have done more but i started drying up). if you do the best you can you will be able to breast feed. it is harder for any child with special needs, but from what i hear with DS babies it can be a little more possible with determination. i will warn you that the hardest thing for me was the depression that went with not being able to supply my child. looking back i am proud, but at the moment i felt like a disappointment. but i wish you the best of luck and remember the first month is the most important for breast feeding and isnt as difficult to supply!

 

[ZubZub]

Hi! I expressed for 4 months with my dd. I switched to ff when I went back to work. The hardest part was her disinterest for night feeds - she didn't want to wake to feed and it was really hard to get her to gain weight. Emotionally it was exhausting! I used a very long teat, it think it was originally made for children with a cleft palate, as children with DS have low muscle tone and they battle to suck off a shorter teat. I used that until she became stronger and then switched to nuk. I remember feeling so overwhelmed by all the health issues kids with DS face, but actually it's been OK. One day at a time and now (she's 4) she's as good as normal in our eyes (with some really quirky ways!)xx

 

[JenX]

I thought of this post today at breastfeeding group. There was a mom of a four month old little girl with Downs and she has been breastfeeding her successfully with few issues. She had to exclusively express for the first two weeks, but then was able to transition to BF with a nipple shield, and then eventually drop the shield.