Cleft palate and other issues.

[Evasmummy2019]

Hi everyone. So my daughter is 6 months old now she's an ivf baby and she was born with a cleft of the hard and soft palate. It wasn't discovered at birth because it was an emergency delivery at 37 weeks. She lost a lot of weight after birth due to jaundice and feeding issues. She was in the special Dr browns bottles and now is on special mam bottles. She eats OK but I'm trying to wean her now and it's so hard. I also noticed her little fringers are both bent and don't bend out straight and I've also noticed her anus is extremely close to her front part. I really would love to se a geneticist. But with all this going on with the virus I've not wanted to bother the gp. I've spoken to her cleft nurse once as her surgery was postponed to when she's 14 or 15 months old. She didn't seem that bothered. Has anyone else had a baby with a cleft palate and how did you wean them successfully. I'm not going to be doing blw. Also did your baby have any other small genetic defects as well as the cleft x thank you

Hi,
Sorry I have any experience with cleft palate but I noticed you mentioned her fingers don't straighten.

My daughter's fingers were the same but over time they have 'loosened' off and they will straighten now. (she's 18 months).

I would definitely push your HV for referrals as it can be a symptom of Triple x syndrome. I'm absolutely not saying that your daughter has it but may be something to consider.
My daughter has some fairly severe delays (still unsure of the reason) so we've done a lot of spoon feeding. I'd say it's just a long, long process but the important thing is that you're getting nutrition into her. Good luck

My 7 year old has a cleft lip/palate, hypermobility, hydrocephalus, global development delay, a birth mark on his tummy and one of his ribs is split in two part way along. Genetic tests have all come back normal so far. I found with weaning him it was really hard at first and most things just fell out of his mouth. It got to the point when I was just giving him finger foods to suck so at least he was tasting things even though he wasn't swallowing anything except milk from the squeezy bottle. Then when he had just turned 1 I had to spend a couple of days in hospital. Dh just gave him a jar of baby food that said from 12 months on it. He did brilliantly with that and I think he found the lumpier food more easier to control with his mouth. I found things like scrambled egg and mashed potato worked really well.

Speak to your GP, we all need as much support as we can get. Get the referral process started, the hospital clinic will decide about when to arrange appointments. You might find the fingers thing is due to tight ligaments and they will ease with age. My DD has a cleft of the soft palate - it can affect their ears, causing glue ear etc. I'm not saying it definitely will, obviously, but as she grows, be aware of ear issues, and make certain any ENT doctors know about the extent of the cleft. Good luck x