anyone have experience of breastfeeding a baby with downs syndrome? tiktok can you help?

[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)

thanks in advance

[tiktok]

Have helped a handful of mums only with this, daisybo. Suggest she calls the bf line and asks about the experience register for NCT...and post on the special needs board here. All the best to her

[charliegal]

No advice, although I know my friend breastfed her ds who had down's syndrome. It was difficult at first but then she went on to feed him for 2 and a half years.

[moondog]

Thomcat might see this.....

[geekgirl]

hi daisybo, I breastfed my dd2 with DS - it wasn't easy, she also had a serious heart defect so was generally exhausted anyway. I was very lucky to still be feeding my dd1 at the time too so had a great milk supply (very often fed both at the same time, so dd2 didn't have to work hard until the milk let down). Maybe this is something your friend could recreate using a breast pump on the other side?

I went on to feed dd2 until she weaned herself at 15 months.

There is quite a lot of info on this on there - have a look here for lots of detailed info.
I would also urge her to contact La Leche League, they do a leaflet on breastfeeding a baby with DS and should be able to help directly if she has a leader nearby.

[geekgirl]

(meant to say that it wasn't easy at first - she did get the hang of it eventually and became very roly-poly as you can tell by my profile pics of her )

[daisybo]

thanks geekgirl, your story sounds really positive. 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

[geekgirl]

I really think this is something that requires professional help, not just over the internet or telephone - sounds like an already tricky situation has become even trickier. Is she anywhere near Oxford? I know they have an excellent breastfeeding counsellor at the John Radcliffe Hospital.
Failing that, she needs to contact La Leche League, or the ABM or the NCT breastfeeding advice line on 0870 444 8708 and find an organisation who has someone nearby. I would imagine just about every breastfeeding counsellor would be happy to help in person.

Just to give her a bit more hope that it can indeed be done even in very difficult circumstances - dd2 had her heart surgery at 7 weeks and was very sick afterwards - she also ended up with a condition where she was unable to have breastmilk and was on a ventilator for nearly 3 weeks, and then tube fed and on oxygen for another 2 weeks (and not allowed breastmilk). Once she was allowed back on the breast she was back to being fully breastfed within 3 days. The staff at the hospital clearly thought I was bonkers for persevering the way I did and sent out letters to my GP and dd2's paed saying pretty much that and that there was no way this baby would go back on the breast.... I'm glad dd2 proved them wrong.