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

Hi all,

We had our repeat ultrasound today to look at baby's cleft. It definitely includes the palate, he has no gum in the middle and his tongue was going higher up than it should so good indication of the palate inclusion. It was good to see him, it's a unilateral cleft on the left side and goes up into the nose, his nose is kind of flat and pushed to one side. At least now we know what he looks like and I think he still looks beautiful. So now the hard yards start with organising everything ready for when he's born. Talking to people at the cleft clinic, lactation nurses, sourcing a breast pump, bottles, etc etc.

Hope everyone had a lovely mother's day!

Hi Everyone,

Its been quite awhile since i was here but now im pregnant with #2 i a little concerned about wether or not this baby will have a cleft like my DD#1. What are the chances of have 2 babies with clefts? I heard its like a 30% chance of having another cleft baby if you have already had 1? Does anyone know if this is true? Does anyone have 2 or more kids and only 1 with a cleft? Just curious.
Hi there,

I found this great UK forum for parents with children with clefts. They have a thread about this topic if you like. Here's the link: http://www.faceforward.org.uk/forums/parent/viewtopic.php?t=886

I hope this helps!

Hi all,

We went up to the Children's hospital last week to meet the coordinator of the cleft palate clinic. We really learnt a lot, got to see a lot of pics, found out more about the whole process and were given a bottle and two teats. It really is amazing what the Drs can do, even seeing babies the same day of their op is really inspiring. It really made us feel more comfortable that our baby will be in good hands.

Not too long to go now, although I feel the size of a house at the moment. I'm getting quiet excited.

I was karenw

TJK How fortunate you are to have all this knowledge and equipment beforehand, and it sounds like your seeing some great doctors.
I admire that you have done everything you can to prepare yourself for your up and comming little arrival, however its still all trial and error at the time.
I still remember when my DD had her op, she went through it quite well, as a matter of fact I think I fared worse than her lol.
Anyway take care, keep us updated if you like and when you have bubs and have time, let us know how you go. Karen
P.s The young lady on the left with the white top is my daughter who had a cleft palate and small jaw.

Hey all oh my god things have been so hectic lately but finaly managed to jump on even if it is only for a minute or two lol
After spending the last two months stressing i need to know how to get my girl to eat solids?? I tried two different types of spoons, tried tipping it in (which she imediately spat out) letting her try and suck it off the end but she still prefers to screw her face up and spit it which means im lucky to even get two teaspoons in let alone one :S Any ideas would be much much appreciated i'm going to ring the speech therapist later in the week if things dont improve as im wondering if her jaw combined with her s & h palate is whats behind the issues :S Aside from that she is gorgeous and growing so well got a new appointment with the cleft team for in september so quite anxious about that. How is everyone and there littlies?
Okay i gotta run take care everyone
Jess

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

Hi Guys

Well I was just searching for websites that sell Haberman feeders when I came across this forum. I had previously signed up for the huggies website but hadn't really looked around it. I have a dd (assume that means darling daughter) who is now 6yrs and a ds who is now 5yrs. Both were born with a cleft palate in the soft palate at the back of the throat and Pierre robin syndrome. In our situation it is hereditary from my husband. I am now pregnant with baby number 3 and at this point it looks like this wee one will have the same problems. I am so pleased to find this forum, there was very little advice or support around when I had our older two. My friends are all very supportive but they are all breast feeding mums and I think they don't quite understand. I'm sorry I haven't had the time to read all the other threads yet to see where I can offer advice or support to others. The nearest chemist to sell the haberman feeders is on the other side of chch to where we live, hence why I was seeing if I could get them online, postage would probably be less than petrol.
Hi Juanita,

My name is Karen and I have a dd (yes darling or dear daughter) who is now 19 years old, she was born with PRS. I just cant imagine how you cope with 2 kids with PRS. My daughter is still going through, orthodontic treatment and is considering jaw surgery.
Not sure about the Haberman feeders, what about Cleftpals they may be able to help or even your peadiatrician.
Have you thought to ring the chemist where they are, I'm sure they would post them to you, perhaps pay by money order.
For me it was so long ago, not sure if I can be much help as things have changed quite a bit. But I wish you all the best and hope things work out for you. I'm here if you need to chat. Take care Karen

Hi Karen

Gosh your daughters PRS must have been quite bad if she is still requiring surgery now. My husband now 30 had the same condition at birth but like our kids his jaw has grown out fine. However his cousin who would be close in age to your daughter had no roof to her mouth and has serious orthodontic problems but as far as I am aware no jaw surgery. Not actually looking for info on haberman feeders as I used them with my other two and will use it again this time round but thanks anyway. I have decided to join cleft support group this time round, everything happened in such a blur with my first I felt like the choices weren't really presented to me, my husband made a lot of the choices and as his family had joined cripple childrens society when he was young he didn't want our kids going through anything similar. Good luck with your daughters surgery, its scary no matter what age they are.
Juanita
Hi Juanita,

Congratulations on your pregnancy. How far along are you? I suppose at least having been through it before you have a bit of an idea how things will be but I'll bet it's never easy.

Thanks Karen for your comments, now a while ago. I feel like I find out so much information but still feel like I am so unprepared and don't really know what to expect. It's like having a first baby all over again. I'm ready to just take it as it comes and try not to have too many expectations.

Not too long to go for me now. 7 weeks exactly. I'm starting to feel really uncomfortable but trying to savour it at the same time as I'm sure this will be our last baby.

Hope everyone and your munchkins are well.

Hi TJK

I have just had a chance to read through all your entries with regard to your babies cleft. In some ways I think it would be hard to find out in advance but also good. We had no idea with our daughter and everything was such a shock and happened so fast. I am a little upset that our 3rd has the same condition (I was hoping for that chance to breastfeed) but at the same time relieved so I can organise feeders, bottles etc. I am 14wks by the way. I want to give you one piece of advice, don't be hard on yourself if breastfeeding/breast milk doesn't work out. I don't want to put a dampner on things for you but I will share my experience. Hopefully things will work out better for you. There is a good chance your baby won't be able to latch, and it is very hard to sustain your breatmilk with a pump only. I was expressing 3hrly, doing feeds with my daughter (with a haberman feeder) which would take 30-60 mins and this was while I was in the hospital with none of the normal day to day stuff to worry about. By the time wk 3 rolled around my milk supply was very low and I wasn't quite expressing a feed each time. I was told I would have to express every 2hrs to get my supply back up. By the time we got home when my daughter was just over 3wks I just couldn't sustain my milk any longer and 75% of her feeds were formula. I decided to stop expressing rather than stressing myself and continuely feeling bad. Anyway I don't mean to scare you, I'm sure everything will be fine and you and your baby will be fine. I'm sure you son will cope with everything as well. I think you will be surprised.

Regards
Juanita
Hello all
My name is Bec and I have a beautiful son called Cameron.He is nearly 11 mnonths old and he was corn with a Bilateral cleft Lip and Palate.. He had his lip repair done at 5 months old and we STILL cant believe the difference it has made... He has always been a gorgeous boy and now u have to really look to even know he had it... The Cleft team at Westmead are a godsend. We are going to see his surgeon at the end of August and they will tell us when his palate will be repaired but he only has a small hole their which we are so thankful for... I just wanted to share the true joy Cam has brought to me and hubbies lives. He is a wonderful kid with a huge heart and is so social and happy and confident. We have met some great people and our experiences with others has been mostly positive... Sure people look at him but thats what people do!! I just used to explain what it was and they were very interested. Now his lip is repaired more people stop to tell me what a handsome boy he is and dont even notice the scars!
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