Huggies Forum

All mummies and daddies with beautiful cleft palate babies - c'mon in! Lock Rss

Hi all,

I'm 22 and also have a cleft baby. Lucas is 13 months old and was born with an incomplete unilateral right cleft lip.He had his lip repair at 6 weeks old and you can hardly even see it now. He might have to go back for surgery this year as he has a small step up in his lip that the doctor is not happy with. I never realised how common it was either. What I find interesting though, is for something that is so common to be unknown to some many people. I have so many people ask what is a cleft? Does anyone else have this happen to them?
Hi Kelly

I have had a few people who don't really know what it is all about! They tend to be a bit frightened of the 'hole' and don't know how to react to it.

Isn't the surgery great these days - you can barely tell that it has been done. It must have improved reasonably recently as joquin (SP?) pheonix has quite a reasonable scar - although he looks very cute with it... maybe I 'look' for the scars these days, as I don't think I would have noticed before my child was born!

Victoria x
Before Lucas had his surgery when we were out shopping I used to have people walk past and do like a double take then do a loop and come back for another look. It got to me a bit but I wasn't going to hide him away because he was different. I did have an old lady one day that stuck her head in his pram, looked up and said to me he has a cleft lip you don't see that much these days. The truth is the surgery is just so much better then it used to be. When i had Lucas the doctors in Townsville told me that between 7-10 babies are born in Townsville each year with some sort of cleft. I didn't notice it before Lucas was born. Lucas's doctor is amazing, I didn't expect his lip to come out looking so good.
Oh Kelly
how rude of people to be coming around for a second look! OMG! I am glad you are happy with your surgeon! It makes a big difference to have good medical staff! Ours is just lovely... DS was in the children's hossy for about 6 weeks after birth and when I finally got him home I had to go in for an appointment about a week later - he made a point of telling me I was doing a good job with managing DS while I was there and it made me feel really good.

I am not too good as Aussie geography (I am not Australian) where is Townsville? I have heard the name... I had a feeling it was in NZ but now I think I am wrong about that!

Victoria x
Hey Victoria,

Townsville is in north queensland
Hi
I am new to this forum but will do my best. I have an 18 month old daughter who was born with PRS and full cleft palate. She had he surgery to repair the palate at 11 months old so not sure why some have to wait until 18 months. I think it is entirely dependent on where you live and also what kind of growth has occurred since birth. My daughter is now doing fantastically - she still wants her Haberman teat though and they are expensive at $30.00 a pop when she goes through them every few weeks. I personally found the haberman better than the pigeon simply due to her sucking reflex. Her op time was very stressful and completely stuffed up her sleeping patterns. It can be really hard when you have a baby with cleft palate etc and you don't know many people. My advice to people in NZ is to talk to as many people as you can. The cleft support group are also awesome and the Blue book is a fantastic resource for all parents of cleft babies. Also make sure you are getting the child disability allowance from WINZ. It is not income tested and really helps when you are having to buy teats etc.
Hi there

thanks for joining in and telling us about how to get help in NZ! DS had PRS too, I think our surgeon was waiting till 18 months as he wanted as much growth in the lower jaw as possible before reducing the airway by closing the cleft. It might depend on how far back the jaw is at birth then! Did you have to have the Jaw distraction op too? we didn't thank goodness!

Glad to hear your DD is doing so well.

Victoria xx
She has not had to have the jaw operation yet - the surgeon has decided to wait and see if her jaw keeps growing forward. I look at her now and don't think she is any different until I see her next to another childof the same age. The thing she really struggles with is trying to drink out of a regular cup or glass. She uses a sipper cup and we have had noluck trying to get her to suck from a straw. Since herop I have tried to use a number of teats (The cost of the Haberman is incredible) but she does not seemto be able to get the sucking motion correct. It has been an amazing learning curve for everyone in the family. She has done so well though and we have been incredibly lucky that she never struggled to feed. She was nearly 10 pound at birth and I think that has been a big bonus as other than the palate and lower jaw she has not had many of the probs associated with PRS like breathing problems. I know for the first few monthsI was absolutely paranoid to leave her alone when she was sleeping due to the overwhelming fear that she was going to stop. You slowly get used to things though. It has also helped meeting and talking to other parents although I don't know any in the area we currently live in.

Megan
What a lovely big bubba Megan!

I am glad you haven't had to have the jaw op yet - one more off the list at least! I think we might have to go back for another op as DS is making this sound that our speech pathologist warned us to listen out for - sort of the noise some people make in scorn grunting through the nose... gee it is hard to describe a noise in type!! She said we can get the skin at the back of the palate tidied up a bit to help it.

I never managed to have any success with the sippy cup so we went straight to the open cup so we didn't have to keep those $$$ haberman teats. I am surprised that you have had difficulty with the straw Maybe you will have to put something in a cup with a straw that is really yummy and make it the sort of cup where you have to use a straw to get it out! That sounds really cruel actually ... maybe not. Maxy had a lot of trouble breathing at the start - we had a blue episode after he came home from the hossy and he had to go back. As his jaw has grown it is fine now. Like you - I can't see much of a difference between his jaw and those of other kids the same age now. It is the first thing I look at when I am shown ultrasound pics now, and I always tell my friends - oh your baby has a lovely chin! LOL! It makes me sound like a wierdo but they all know where I am coming from smile] I live in Melbourne and we only met about 3 other PRS parents - it is pretty rare! I read stats that say 1 in 30,000.

Victoria xx
Hi!! sorry its been awhile, Caitlin had her first meeting with the cleft team they were so nice and explained everything she see's them again at 5 months to check her jaw to see if its growing but i think its pretty much staying were it is as it hasnt changed much since her birth and still alot smaller then her upper jaw :S, I't turned out she has a cleft soft palate and hard palate which they are going to fix at about 9 months i think the pictures in the blue book are brilliant and really helped me to inform my family.
I didnt realise that some babys have to have there vocal muscles fixed that was something i was kind of unprepared for but all is good people keep saying to her "you will be perfect soon" i get so angry and correct them lol because she is perfect! OMG she just started smiling over the past week its soo gorgeous!

Ok i better go dp wants dinner lol
take care
Jess

Jess - http://www.playtimemagic.co.nz

Hi Jess

I am glad the cleft team and the book were good and helpfull... Darn right she is perfect already LOL! DS had muscles moved during his op, I kind of was the opposite to you and thought that was standard as I was told about that before he was even born - we met our surgeon when I was about 4 months pregnant as it was picked up at ultrasound.

Glad you are getting on OK Jess. I need to ring my cleft team as I was at the children's today for DD and saw the cleft co-ordinator - a very glamourous woman - and realised we still haven't had DS's 3 year check and there are issues with his speech I need to raise - he is making a sound the speech pathologist warned us about.

Anyway
Take care big hugs to that lovely girl of yours for her lovely smiles!!

Victoria xx

Hi everyone

I have two DD's who are 21yo and 19yo. and a DS who is only 8 weeks

DD19 was born with P.R.S (cleft of soft and hard palate, receded chin) I too have gone through the repairs, grommets, dribble, speech therapy, orthodontics. etc..
And its been worth every bit of it, the stress, guilt of seeing her suffering and sometimes in pain. She has turned into a beautiful confident young women.
Sometime next year she is to have her jaw extended, though unless you know you cant see anything as its grown out a bit now. I also talk to other parents and my DD has allowed me to use her pictures to show.
I remember the looks I got when she had her splints on, people gave me the dirtiest looks thinking baby has broken arms. I laugh about it now.
Look forward to checking how everyone is going on the thread.

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