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Any experiences of a cleft palate?

(22 Posts)
flopsybunny45 Mon 07-Sep-15 07:42:52

Lo is 4 months and bf fed well from the beginning. However at 2 months he started to not gain weight. He's now 0.4th pc having been above 50th pc at the beginning. He loses a huge amount of milk through his nose, mostly while feeding and then also a little in the minutes that follow a feed (he looks like he has milk snot!) he will soak at least one muslin and usually my side during a feed. When he comes off, the side of his face is usually soaking too. It upsets him as it gets to the point where he cannot breath v well during the feed. I've tried feeding more upright but he's long and gets upset/pushes off the breast. Perhaps as a result of not being able to breath through his nose he sounds like he takes in a huge amount of air throughout a feed, despite an apparently v good latch - he's my second and my first had tt so I feel I can recognise a dodgy latch.

Could this be an undiagnosed cleft palate? My gp dismissed the milk and said it's normal. It just doesn't feel it, because he's losing weight despite feeding regularly and not happy when feeding - any suggestions much appreciated!

JiltedJohnsJulie Mon 07-Sep-15 17:04:43

I don't have experience of a cleft palate so can't help you there. Wouldn't it have been picked up before this?

Have you spoken to a BFC on one of the Bfing Helplines?

flopsybunny45 Mon 07-Sep-15 22:49:23

No I haven't - thanks for suggesting - where can I find a number?

Cheers

JiltedJohnsJulie Tue 08-Sep-15 19:06:46

Sorry, only just logged back on. The numbers are here. Is there a Bfing Support Group near to you?

Imperialleather2 Tue 08-Sep-15 19:14:28

My daughter was born with a cleft and I had to bottle feed her with special squeezey bottles as she couldn't get any suction. My understanding is that with a cleft they cannot be breast fed as they can't suck. That what I was told anyway.
I suppose he could have a small whole which means he can get some suction. My daughters cleft was huge so no chance.
The easiest way to tell to be sure would be to have a look. The way the cleft team do it is lie them back on your thighs with their head towards your knees and tip their heads back - get a pen torch and have a good look in the mouth and look for holes.

Sunflower6 Tue 08-Sep-15 19:17:49

Hi my daughter was born with a left lip and palate. There is a condition called submucous cleft palate which can go undiagnosed if you think this is possible contact the cleft lip and palate association - clapa for advice they have a website and their number is on there. Did the gp carefully examine the palate to check for a cleft?

IBelieveInPink Tue 08-Sep-15 19:22:13

My son also dribbles milk from his nose, but only a small amount, nothing like you describe.
As soon as I mentioned this to the hv and the GP they both checked his palate straight away.

I'd get a GP to check again (thoroughly)... Should be the first thing they check from what I've experienced.

roundtable Tue 08-Sep-15 19:24:57

Submucal cleft palate is hard to see until they get older. My child wasn't diagnosed until he was 3. Looking back all the signs were there, very similar to your experience although my dc could not latch on at all.

Ask the gp to refer you.

Good luck flowers

flopsybunny45 Wed 09-Sep-15 02:46:21

Thank you - so helpful! Gp dismissed my worries but did have a very brief look in his mouth with a torch whilst dc was sitting on my lap... She didn't have a good look and said we'd have noticed it by now if he did have one. Frustrating!

roundtable Wed 09-Sep-15 13:17:00

My ds had been to the dentist and gp, neither noticed.

It was only the fantastic speech therapist who identified his speech issues sounded structural and made an appointment for me with cleft palate department. They needed to do an x ray to be certain.

Does your dc have a uvula the 'dangling bit' at the top of his mouth at the back?

roundtable Wed 09-Sep-15 13:19:17

Excuse my bad grammar, phone is playing up!

flopsybunny45 Thu 10-Sep-15 01:43:51

Not sure roundtable .... Will try to look. How was your lo's feeding and weight gain? Thanks

roundtable Thu 10-Sep-15 06:23:27

His weight gain was fine but I had to bottle feed him after great angst by me. I thought it was my fault and was very upset. He was starving though as he couldn't latch on at all and then would scream. Now I know it wasn't my fault!

He used to take an hour to drink 30 mls for a very long time which I thought was normal at the time as he was my first. I fed him on demand still so although it was slow and erratic, he mainly put on weight. Leaked milk through his nose and mouth, I thought he was a bit messy, no one said anything. Very quiet baby, barely an audible cry even when he was very distressed.

It's hard to see at the back of their throats until they are older which is why that particular cleft palate can be easily missed. He doesn't have a dangling uvula, and there's a split in a kind of misshapen lump where it should be. Make a fuss and try to be seen again or to see a midwife.

Weaning wise? He was fine, but as he's got older and I think the gap has got bigger we have had many choking, not gagging incidents, where I have had to pick him up and whack his back repeatedly to dislodge food which is really frightening. I never let him eat out of an adult's eyeline and constantly remind him to take small bits. People who don't know me must think I'm overly neurotic!

We're waiting for the op now. Feeling nervous.

Hope you get some answers op.

Imperialleather2 Thu 10-Sep-15 11:23:19

Hi Roundtable

What will your sons op do?

My daughter has had her cleft repaired and she still doesn't have the dangly bit at the back.

I was dreadfully worried but it honestly wasn't as bad as i thought it would be if that's any reassurance. Are you goings to the Evelina.

roundtable Thu 10-Sep-15 13:28:55

They're going to cut the muscle and fasten it together and repair the hole. I wouldn't have thought he'll have a dangly bit afterwards though. Then if that doesn't work they'll build up tissue at the back of his palate to get rid of the gap. They said there was a 50% chance of the first op working so who knows. Did the say the same to you?

It seems to be more traumatic for theparents than the children so I've heard. How is your daughter's speech now?

Glad it went well for you flowers

roundtable Thu 10-Sep-15 13:32:10

And not the Evelina, one of the other 5!

Imperialleather2 Thu 10-Sep-15 18:59:04

We were told 20% failure rate. It might be a,slightly different op. The whole of the roof of dd's mouth was open. Every time a different person would look in they would say wow it huge.

She nearly 2 and her op was delayed by 6 months. She's not talking yet but making sounds now.

Good luck

roundtable Thu 10-Sep-15 20:23:55

Oh wow, it sounds like it must have been very hard for you.

Hope your dc's speech continues to develop well. flowers

roundtable Thu 17-Sep-15 16:05:31

How's it going flopsy?

flopsybunny45 Fri 18-Sep-15 19:35:15

Thanks round table... They've checked his palate at hospital and think it's intact. They think problem may be allergy related and the nose milk possible reflux as a symptom of dairy intolerance possibly. However, he is going to see the speech and language therapists who will check how he's feeding/swallowing... On neocate at the moment but hoping to return to bf next week with me having cut out various allergens. Nobody mentioned the hidden cleft that can happen so I guess not a worry??

anotherdayanothersquabble Fri 18-Sep-15 19:40:44

Could you get your and the baby to
Childrens Osteopathy Clinic? They might be able to help..

roundtable Fri 18-Sep-15 19:47:23

Gosh, that sounds terribly frustrating when you must want it sorted.

Hope you get answers soon.

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