Cleft Palate spotted at 7 months

[RentonD]

Hi,

First pist so apologies for any mistakes!
DS is 7 months old, and we took him to the drs a few days ago due to the top of his mouth not looking right (something we'd queried in the first week, but midwife had said he was fine). Dr took one look and put an urgent referral in for cleft palate.

Just wanted to hear from anyone else who's had a late diagnosis for their child, and what the process / treatment was like considering late diagnosis?

Also any experiences of surgery/recovery for cleft palate in general!

Thank-you

Have the cleft nurses been in touch with you? They normally see all new referrals within a couple of days. (Or they do in the region I work in) I work on the ward that looks after navies who've had palate repairs. Its normally a 24-48 hour stay depending on how they recover. Have to monitor feeding and breathing. Soft diet for two weeks afterwards. And plenty of pain relief afterwards.

Cleft teams tend to be pretty good at joined up care, so you should end up in good hands. As long as he's feeding okay, there's no desperate rush, as cleft palate surgery is usually done older than this anyway, often just short of a year. But worth seeing them soon so you can have any questions answered.

Thanks toddlerteaplease for your reply - are you UK based? We are, but referral went in 2 working days ago, so fingers crossed we hear from the team this week!

Nocoolnamesleft I love your username! Thanks for your reply.
Yeah he's feeding ok, struggles with anything that can get sticky (toast for example), but still having a wide variety so not too worried about that.

@RentonD yes. In the Trent cleft team. Not sure how others work. But the joined up care is expand a PP has said.

DS was born with a cleft lip and palate 30 years ago! His was totally visible, but just thought I'd hop on to say that he had his first op on his lip at 10 weeks, but importantly for you, the optimum time for the palate repair (all those years ago) was 10 months, so you won't have missed anything.

Tough thing for you to go through, but he'll be in the best hands.

Yes. They aim to the palate repairs between 6-12 months. Being weaned helps massively post op ad they'll often take solids before bottles. Some babies never get back on the bottle and go straight to a cup. Soapberry start introducing one.

So maybe, that should have been.

This is so poor. Please follow with Gp, if not heard anything by Thursday.

I’m not sure if it helps but I was born with a cleft lip and palate. My mum and dad were really worried but after my op I was fine. I did need speech therapy when I was older but not sure if that was due to the palate or the lip but it hasn’t effected me at all growing up and as an adult.

My lovely dd now 9 was born with a cleft palate.

We were told they aim for the surgery to be done at a year although hers was done at nearer to 18 months because of colds and illness etc.

The main concern usually for a new born is that they can't feed properly. We had to use special squeezy bottles. By the sounds of it though this isn't a problem for you.

The cleft team we had were great. and the recovery was surprisingly quick.
I expect you'll be slotted into the list and it will be done when necessary.

I

Thank-you everyone for your responses - it's been very helpful. I will definitely chase up later this week if I haven't heard anything!

Hi OP,

Bit late to the conversation here apologies. Just wondering if you have heard back about your referral and where you're up to?

My daughter (just turned one yesterday) was born with a cleft lip and palate. She had her palate repair done only a few weeks ago so I am happy to help with any advice or questions you might have! It's all very fresh in my mind still. If you'd prefer to DM that's totally fine! Fwiw my girl is absolutely and completely fine and I have no doubt your little one will be too x