Submucous cleft palate & breastfeeding

[KMC92]

Does anyone know if a submucuous cleft palate can impact breastfeeding?

My little one is 13 weeks old. He had two tongue tie cuts, once at 4 weeks (100% tie) and again at 10 weeks (70% tie).

He thrived at the start but I also had a great supply of milk. When my milk settled at 6 weeks he started to not gain weight and the issues began, I originally put this down to the tongue ties.

Now I'm wondering if the palate means he can't suck well and may never be able to effectively draw milk from the breast? At the moment we mix feed with expressed milk but it's exhausting and all consuming so thinking about what to do going forwards.

It certainly can make things harder, you may be able to get local 'hands on' as it were support in making sure there's a good latch on. Advice includes trying different positions to see if different positions make it easier for both of you.

One piece of invaluable advice I came across is looking for any signs of dehydration signs to watch out for - if your lo is producing plenty of urine etc. then you can be confident he's getting plenty of milk.

Good luck

One of mine had a very VERY high palate. We were told it was as high as you can get before you get a cleft palate. It had a significant impact on breastfeeding because the top of his mouth was so high there was nothing for him to press his tongue up against to force the milk out of the breast. We had a lot of specialist breastfeeding input and were ultimately able to manage exclusive breastfeeding (after a bit of formula top ups while we got to grips with things), but it was a struggle. We were taught specialist positions to help with the 'nothing to squeeze against' issue - mostly the rugby ball hold if I recall. So definitely get specialist input - you may need to be really pushy.

I loved the rugby ball hold, I found it soo much easier with with first. I had a great armchair with wide arms I would sit in note Americans call it the football hold cute cartoon diagrams

@howdoesatoastermaketoast I have tried local breastfeeding support but find the lack of knowledge in clefts cause a bit of a barrier to getting proper support. I did try the rugby ball hold but he could never latch from that position!! I really wanted it to work as it was a good angle for his cleft.

@Justanothergeneric I hadn't thought about that with a high palate, my son has a groove on one side so could be having a very similar impact!

How long did it take for things to click? I'm 13 weeks in and it feels like we will never get there. Did it get easier as your little one got older?

When you say specialist input, what kind of specialist and where did you source it? How did you push for it?

Have you contacted CLAPA (cleft lip and palate association)? Would've thought they'd be able to help.

In terms of our path to getting help, he had failure to thrive two or three weeks in which led to him being admitted for jaundice. He was treated under the lights and discharged but then started getting worse again. It was all very frustrating (as well as scary) because I'd very successfully fed my first one and I had such massive oversupply that I could have jetted someone in the eye a few metres away, so I knew the problem wasn't at my end but was something wrong with my baby! I was a bit unimpressed with the approach of that hospital so I pushed for a referral to a different local hospital. They happened to have a specialist failure to thrive clinic aimed at keeping kids out of being admitted to hospital overnight. The midwife there spotted the high palate issue and referred me to the lead of the local breastfeeding team. I had a few appointments there which were basically like physio but for breastfeeding. I had to do tonnes and tonnes of pumping for weeks to keep things going while we worked on things, because obviously a bottle is an easier milk delivery method if the baby can't suck well. We also did cranial osteopathy privately at their recommendation on the basis that it might relax his jaw enough to help him get a better grip - I'm not sure I 'believe' in as such as it is a bit woo but it did seem to help.

It took until about 8 weeks to really crack it (in the sense that I wasn't needing to pump anymore and he was off formula top ups). It took maybe another couple of months before I could transition away from the specialist holds like the rugby hold (which are not convenient to do out and about) and just whack him on the boob any old how like my earlier child.

If you PM me your location I'll tell you if any of the places I went might be local to you.

You can get special teats for cleft children. My dad was born with a cleft similar to your baby & due to the age he was born in to never had any surgery to repair it, my nan told me they fed him with a dropper until he was big enough to move on to a cup. Have you been seen at the hospital yet with a view to repair when he is older? There may be a specialist nurse who could advise you on feeding, you won't be the only mum with a baby with a cleft.

My 9 year old had a very wide cleft palate and we were fortunate to have a very enthusiastic infant feeding specialist who also referred us to a breastfeeding peer supporter who also had a child with a cleft palate. My son couldn't breastfeed but there are some helpful videos on youtube that I used when I was trying.