Cleft lip

[Babybear1117]

Just had our 20 week scan and was told baby has cleft lip, staff were great and have referred us to Nottingham. Just waiting for a call from the specialist team.
Has anyone been through the same or similar and what were your experiences please?

Anyone ?

Sorry I haven't personally. I remember a friend though and the baby had a special nurse and special feeding bottles until old enough for an op which I think was around 3 months old

Wishing you all the best till someone comes along with more info

I’m not sure if it helps but I was born with a cleft lip. I had my first surgery when I was 6 months old and 3 more as I grew (I think they around 7 and 12 and then my last one when I was 17). You can barely notice my scar now and I don’t remember it being an issue growing up. I also have a deviated septum caused by the cleft but as it doesn’t affect me I’ve chosen not to have any surgery.

One thing I will say is that my parents decided not to take pictures of me until I’d had my first surgery and I really wish they had (me and sister used to think I was adopted because I suddenly appeared in photos as a crawling 6 month old!). I didn’t see a baby with a cleft until I was much older and was really upset by it.

Thankyou @ChipVinegar I have been reading up about special bottles and feeding equipment got our appointment through for Monday so hopefully we will know more then.

@Pinkandpurplehairedlady so you had to have more than one op? From what I've been reading so far they seem to do one op then monitor the baby, speech, feeding, orthodontic care. I had a brief thought about pictures earlier and I'm pretty sure I will still be taking photos from day one. It's something that makes you you and I can't imagine it was nice for you to not see any proper baby photos of yourself.
Thankyou for sharing xx

My DS2 now 13 was born with a complete cleft hard and soft palette. He’s had about 4-5 surgical procedures for the repairs. Feeding was difficult but we had lots of support from the speech and language therapists to find a bottle and cup that worked. His last procedure was 2016, he had a bone graft from his hip put into the cleft to help with adult teeth growth. He’ll need orthodontic help too with his adult teeth. It’s all been very straightforward in many ways as there are very regular reviews with our regional cleft clinic that the plastic surgeon heads up.

My dd2 has (had) a cleft of the soft palate were seeing her team sailsbury in a few weeks to discus ongoing care

Its helpful that you already know it's expected dd2s was a surprise and she was struggling so hard to feed for 12 hours before our nurse could get to us

You'll be given some MAM bottles by your nurse I recommend Dr Brown's there s a special site you order off as they need a special valve about £10 a bottle but cut dds colic in half cleft babies take in lots of air get lots of burp cloths

There's a Facebook page called CLAPA were all very friendly

Surgery now compared to a few years ago is amazing a lot of the kids you can't notice it

Your son will get an appointment through to see your team they'll take pictures if his lip and inside the mouth for the surgeons to reference and discus how they'll do the operation

Lips are done about 3 months old if baby's a healthy weight palate soft about 6months or later if they had lip as well
I'm not sure about hard palate I'm afraid

Dd2 is only 15 months she has issues due to the cleft hearing problems speech delay and balance issues
My in-laws since her birth have slowly been pushing us out of their lives due to her issues (more than I'm willing to list publicly)

Iv got to go to work but feel free to private message me any questions you've got

@babybear1117 I’m 39 now so I think a lot has moved on since I was born. I had multiple ops because as my face grew my scar didn’t so my lip would become more of an inverted V shape iyswim. I was really fortunate to have to same surgeon throughout who was a bit of perfectionist.

Do you know of your baby also has a cleft palate?

My DD was born with a cleft palate and honestly the maxillofacial facial surgeons are some of the best surgeons in the world.

They pride themselves on getting the best result for your child and the care pathway has been exceptional.

We were very worried about the op but it went really smoothly.

The bottles you may need to use are rubber so you can squeeze the milk in. My DD had a huge gap and couldn't get any suction so breast feeding was a no for us. I expressed instead.

Not all cleft lip babies need help with feeding.

From memory I think clapa will fund a 3d scan for you so you have a sense of what your baby looks like before they're born and you don't get a surprise.

I suspect you're slightly in shock but help will be there for you.

@kerpob thank you. Sounds like they know exactly what they are doing. Glad your DS is well and hasn't been affected growing up. Thank you for sharing xx

@Ferretsrule yes in a way I'm glad it has been picked up now and it gives us time to research and find out everything we need to know. We have been referred and have another appointment on Monday. The lady who rang me from the hospital we have been referred to was lovely and mentioned CLAPA too. I had a look on the website and there is plenty of information like you say.
We don't know about palette yet only the lip.
That's awful about your in laws! At the end of the day yes it makes them unique but it doesn't mean you love them any less.
Thank you so much for your advice and help for where to look for more information xx

@Pinkandpurplehairedlady of course they makes sense I never thought about that. I've seen before and afters and have to and they look amazing

@Blankscreen no, we don't know yet. Have an appointment with the specialist on Monday so we will know more then.

I've heard the surgeons are amazing. My DP said we will pay to go private if it helps.

I'm glad the op went smoothly! I was planning to breastfeed too so will speak to the specialist about that.

The 3D scan sounds like an amazing idea so we can see baby. I'll have a look on the clapa site

Iv not been to nottingigham but some questions to ask your team so you can plan ahead

When he has the operation are you able to stay overnight? One or both parents? Stars appeal helped us in Salisbury No idea if Nottingham have similar

Find out if your surgeon allowes dummies after the op some don't and if he's used to them it's another thing for him to cope with
(I found mam were the only ones dd2 could cope with)

I remember my nurse telling me of a site you can get the Dr Brown's bottles from you get 2 free but not the main site I will try to find it or ask your nurse about it

Mam bottles you must cold water sterilize and you squeeze the milk into baby's mouth
Dr Brown's baby chews the teat and the one way valve means it goes where it should you can steam these
So you can plan ahead dd2 fed little and often 1 oz every hour for the first month and it took 20 minutes to feed her she got so tired eating she couldn't finish then woke starving it was a vicious circle and we went through clean bottles quickly

The cleft team if you ask may also lend you a breast pump we got a hospital grade mendela for 6 months only sent it back as i needed meds that went into the milk so not safe, I know some baby's can breast feed fine but until you try you dont know

After seeing the way they treat dd1 compared to dd2 I can't ever forgive them my sil especially try to be open about everything with your family it might help them understand it better where see was a shock I do wonder if they didn't feel that could ask about it

@Ferretsrule
Thank you for the list of questions! I had been thinking of things I wanted to ask so I will get a little book and write them all down. At least that way I’m prepared and won’t forget anything!
I would hope that we could both stay but will definitely ask.
Yes definitely don’t want to suddenly ban dummies, better to not introduce them at all.
I was looking at the Dr Brown bottles they look amazing and definitely better than the MAM one from what I can tell as you don’t need to squeeze them and sterilising. I will ask on Monday

I have actually bought a nuby digital great pump the other day as it was heavily reduced I’ll speak to her about this too as I can always return it.
We have told both our parents and so far they have been really supportive so I hope it stays that way. I think I will feel a lot better talking about it the more I know. Just can't wait for Monday to come round now!

Good luck tomorrow. Keep us posted

Thankyou @kerpob not there until 3pm feel like it's been a long few days x