Resources on bf a baby with Downs Syndrome?

[MommyJogger]

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!

 

[scoobydrlp]

I don't have any first hand experience, but didn't want to read and run. Maybe try posting a similar thread in the special needs forum?

 

[angelandbump]

I have no first hand experience but I remember watching the baby whisperer and she recommended the haberman bottle. It is designed with babies with additional needs but is also great to switch between breast and bottle. There's a link to the video on you tube.
https://www.youtube.com/watch?v=uJ_iU-cRHFE

Xx

 

[Mapleroo]

I don't have experience with Down syndrome specifically but my first baby was mentally handicapped (didn't know till he was a bit older though). We tried everything and he would not latch. It was so bad that the nurse that had come to the house to help, stormed out saying if I put him in the bottle she wouldn't blame me. He was fine with the bottle, but as he got a bit older he never mouthed anything and actually never chewed (food) till he was 8 years old. He is now 13 and has since been dx with some mouth problems that have affected his ability to talk. In the early days, we were told that the inability to BF is quite common amongst babies that have similar problems to his. Having said that though, a family friend had a child with CP (completely wheelchair bound, blind, no speech) and she exclusively breastfed without a hitch!

 

[summer rain]

I remember midori1999 has a son with Down Syndrome and I believe she did BF him but not sure if she still visits the forum anymore? Also the UK Down syndrome association supports and encourages BF and states there is no real reason why babies with DS cannot be fed direct from the breast. I know you're not in the UK but it may be worth getting in contact with them anyway? Xx