Newborn with Down Syndrome - feeding problems

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Hello

Our beautiful dd was born Friday eve. We had a prenatal diagnosis & were told feeding difficulties are v common & they'd want to keep us in until she was feeding well. I bf my other two kids & really want to do the same with her.

Anyway. She is very very sleepy & needs to be woken to feed, on the breast she has tended to suck once or twice & then zonk out again. She's managed a couple of breast feeds of 10 mins. She's also now developed jaundice & is on a billy mat (light mat thing in her cot) which she has to stay in whenever she's not feeding.

The paeds team have said that if there's no improvement today they'll take her onto the scbu for naso gastric feeds. I'm expressing for 3hrly feeds of 45ml - they've said no direct bf for now as it's so tiring for her & they need to know how much fluid she's getting. Initially they said she'd need formula but luckily my milk has come in so I hope expressing will give her enough.

The teams here are great but I guess I'm posting hoping to hear from others who've been here. Feeling a bit emotional, especially as I can't hold her while she's needing the bed

Thank you

Congratulations on the birth of your daughter

Hopefully someone with helpful experience will be along but in the meantime you might find blogs like Downs Side Up helpful.

Thanks Porter, you saying that just reminded me I'm following Downs Side Up on FB so might message her there x

Polter

Your description of trying to get her to feed sounds exactly like my struggles with trying to breastfeed my son 9 years ago. He is autistic. I'm afraid I never managed it and gave up expressing milk round about the 8 week mark (it just gets less and less when they don't feed no matter what curious herbal remedies you try). My honest advice but it's just my personal experience not gospel would be let her have however much she needs in a bottle whether breast milk or formula. We ended up in hospital with him on the gastric nose feed thing and he got (or was it brewing beforehand??) an infection. Sorry to be doom and gloom! BTW if any stoopid people tell you she's not breastfeeding because you're not trying hard enough just ignore them, if you can refrain from killing them.

:) luckily pretty much everyone is being great so far! Getting to 8 weeks is amazing - I will be pleased if we can do that.
She's fine with the bottle today- was struggling with it yesterday, getting overwhelmed. Reassuring that there are big changes day to day..

Congratulations on the birth of your darling baby! You will have lots of fun in the years ahead I promise but first the feeding bit ...

So my baby is now 18. Also happens t have DS and was a b** at first with breast feeding. So this is what helped with us

1. Try little and often - but not so much you end up in tears.

1. The latching on bit is the difficult bit of our kids to get at 1st. You need to make sure the nipples is "square" to there mouth and they get the idea once it is there to stuck - gently stroke the cheek and make a sucking noise (sounds mad I know but it does work).

1. When they drop off to sleep - wake them by tickling feet or arms.

1. Keep an eye on head crater - if it gets too depressed i.e. maybe dehydrated then a little boiled water is ok

1. Don't panic. Once they get it - about two weeks in our case as had been in special care - then you will not look back. Promise.

(Oops pressed button too quick)

Having jaundice will make the sleepiness worse but once that start to go she will wake. Hopefully that will be soon.

You will get there. Medics will get contend quicker as our kids are more vulnerable but trust your instinct with her- will be no different than for your other two.

Good luck. Keep us posted.

Your DS adventure begins.

X

Your description also sounds like my autistic DD. She was my first and I thought she was BF but, having successfully BF my son a year later, I don't think she had the strength. She was born at 37 weeks and just over 5lb (she doesn't have Downs Syndrome though).
My solution was to express and bottle feed. I managed 8 months of that but, with hindsight, I wouldn't have gone on that long as I was barely producing much after 6 months plus ut was exhausting pumping, sterilising and feeding and that was with just one child. I did it out of guilt at not being able to BF when there are posters all over the NHS guilt tripping Mums about BF.

Perhaps see if you can get a BF counsellor to come and see you?

PassionateMum offers some good advice.

Congratulations on your new little one!

Congratulations! I'm glad dd is feeding a little better today, but just wanted to reassure you in case she does end up needing an ng tube for a bit. Dd2 doesn't have Downs Syndrome, she has cerebral palsy, and in our case it wasn't possible to bf (She is my third DC and I had successfully breast fed both of the others). She was born at term but with no suck/ gag reflexes, so was tube fed from birth while the scbu staff worked on triggering her suck reflexes etc. Within a few weeks she was taking most of her feeds by bottle with ng top-ups if she was too tired/ sleepy to finish. By five weeks she was fully bottle fed. I actually only managed to get her latched on once. It only lasted for a minute (we were both completely astonished that she managed it) and I never did manage to get her to latch at all after that.

I just wanted to let you know that although an ng sounds scary, it can actually be a really good way to supplement feeding and increase strength until she is able to feed fully without that support, if needed.

If you continue to have feeding issues and wish to continue bf, there are also specialist breastfeeding supported who can help you with supplementers etc. We actually had the support of a speech and language therapist (feeding specialist) from birth until after dd2's second birthday. From 6 mos we attended a community communication and feeding support group, with a huge variety of sn babies and toddlers including several with Downs Syndrome. This group (run by our SLT and a physio) kept me sane through weaning a kid with complex oromotor difficulties.

Congratulations on the birth of your lovely girl! My DD was born at 34 weeks with DS and we had a hideous time with feeding for the first few months. But a couple of things definitely helped. Most important, for us, was keeping on offering her the breast in addition to expressed feeds. So when she was finally strong enough to feed properly, she knew what to do. Her suck suddenly got stronger at a certain point a few weeks after she was full term - apparently that's normal, so hopefully your DD's will, too. (She wouldn't/couldn't take a bottle, so we topped her up with an NG tube until she was 6 months old (when she finally decided bottles weren't evil).)

Getting her into the right position to feed was also important, as she was very floppy. Variations on the rugby hold worked best.

I'm a member of an FB group for breastfeeding babies with DS. It's a very supportive group with masses of collective wisdom. Feel free to PM me if you'd like more info on it, or if I can help in any other way. There's loads more I could say about feeding but am rushing off to meeting.
xx

ps I know it's incredibly stressful but it does pass and your DD will thrive. My tiny, prem baby with multiple heart defects is now a thumping 20 kg three-year-old!

Nipple shields! Definitely helped her get the hang of latching on to the breast she found harder to get to grips with

Oh, and - after a very unpromising start, DD ended up breastfeeding (in combo with bottle) until she was 18 months!