new born with cleft palate

[kmowell]

Hey all...Just had my second baby, got home 4 days after my section only to be brought back in 2 days later to establish feeding - Cleft soft palate noticed by my midwife at home.Feeding had not been good in hosp so did suspect something was wrong. Anyway, am now formula feeding as breast was not an option and dont have enough hours in the day to be expressing ( have a 20 month old ) Feeding going well if not a little time consuming and baby thriving. Just wondering if anyone has has a similar diagnosis with their wee one and any thought... advice... welcome. Have been advised that he will operated on between 6 and 12 months..

Hey, i dnt knw if this helps but my younger brother who is now 21, was born a cleft palate aswell. i knw things have changed, medicine has advanced alot too but i remember my mum having to express milk. 2 b honest, my brother has had a lot of opertaions since he was born, he still got 1 more to go on his nose, but thats probs coz they didnt knw much bout it 21 yrs ago n were still practicig surgeries techniques on him. He had slight breathin probs n was asmathic wen he was young, and had a lot of appointments with doctors and dentists but apart frm that he's led a pretty normal life. i hope u lil one is in good health n wish u all the best, if u need any other advice or just wanna talk, dnt hesistate to ask

Congratulations on the birth if your little one. Its great that baby is thriving despite the cleft - that's the main thing for now, and you'll get there with all the other little hurdles. My dd has a repaired cleft palate (she is 2). I could go on about it for ages, or I could just point you in the direction of faceforward - a very friendly parents group for cleft lip and/or palate... Take care

Good Morning and congratulations on your new born.
You are probably all over the place at the moment and not too sure of what this all means.
My son was born with a cleft of the soft palate in 2003 and initially I was in shock because it meant bottle feeding and surgery, potential speech problems and glue ear.
However......
He was given formula milk and the breast if he needed comfort (he didnt suck very well so he didnt get milk from me). I did express but it was a nightmare so I gave up grudingly when he was 3 weeks old. He woke a couple of times for milk every night because he couldnt suck for long as he got tired.
I used special bottles from CLAPA the cleft lip and palate association. They send them out to you ASAP and are excellent.I also used orthodontic teats (they are flat instead of nipple shaped) and they cover the cleft better (try NUK teats).
After every milk feed, I gave him cold boiled water on a spoon to clean the cleft area and also it got him into the habit of drinking water which is still his preferred drink!
Weaning was a bit of trial and error as before his repair food would come down his nose. This is fine as long as it is not acidic- fruit especially as it stings the nasal area.
He had surgery at Edinburgh childrens hospital when he was 5 months old. He was in hospital for 5 days and the surgery went very well for him (I was a wreck but hey, ho!)
He is now nearly 6 and has not had any glue ear, his speech is perfect and his hearing is A1; a perfect, loving, bright, intelligent and happy little boy.
I hope this helps.
Karen

Thank you Karen, very similarly to you have given up on the breast feeding which really disappointd me, however realistically as long as he is gaining weight and thriving that is all that counts?!CLAPA have been fab, using squeezy bottles and Nuc ortho teats and he seems to be managing ok, Should i start the teaspoon of water after every feed? what is the benefit of that? Should be in for surgery after 6 months ( Yorkhill...am in Glasgow)Hoping we will manage to avoid the glue ear and that his speech is ok....Never thought i would be worrying about this sort of stuff......
K

Good Morning,
We were managed in Edinburgh at the sick kids hospital and my cleft nurse suggested a teaspoon of cooled boiled water after every feed to clear away any of the milk that might be in the cleft area. Also, after surgery, again to keep the repaired area clear. From a health perspective too as some of his friends wont drink water whereas it is the first thing that Henry will ask for.
It is hard not to get upset about the breast feeding and I went through major heartache over it. However, Henry didnt know any different and I have a fantastic bond with my child which wouldnt have been enhanced by feeding him and he is fit and healthy and hardly gets ill. I did contact 'La Leche' and they sent me a leaflet about breast feeding babies with clefts but to be honest I tried and tried and it made my welbeing worse. Scotland seems to have a superb cleft service (we since moved down to West Sussex and although the service is ok, it is terribly disjointed).
I am more than happy to speak to you if it helps. Not sure how to organise that as I dont want to give out my number to all.
You seem to have everything else to hand- once the feeding is sorted you will feel so much better. Little and often is how I managed Henry. Speak soon, Karen,x

Hi again,
Just looked back and thought that my previous message might sounds a bit dismissive, which I didn't mean it to be. How are you both getting on? I found the early days a bit of a mightmare if I'm honest. I expressed for 3 months but wished that I could stop sooner, got mastitis and had to wind down slowly. It was exhausting and didn't do us any good. It made me very tearful at the time, but now I really don't mind, and we are really closely bonded. I think that there is a lot of pressure out there to BF, and in our cases there should not be, our babies cannot suck and full time expressing is very hard going! I'm glad that you have been helped by CLAPA to get the squeezy bottles. Have you had much support from your cleft nurse? Mine was invaluable. We had weekly visits at the start and then monthly until she was one - it was so helpful. Glue ear does affect a very high proportion of cleft children, and my daughter has had glue every time that she has been checked, but her hearing is not very far off normal, and they have not had to give her hearing aids or grommets yet. As for speech, just make sure that you talk to to your little one face to face nice and clearly right from the start and that will give you the best possible chance. Wishing you loads of luck for the future, and hope to hear from you at FaceForward if you ever want to chat to other cleft parent. Take care....

Here is a blog that documents the process of a child who is now 11 who has just had the final operation for cleft palate. If you look in the achives you will find lots about the journey.

www.patchofpuddles.co.uk/