my cleft baby

Hi all out there. I've just joined this.Never used a computer much,especially this e-mail stuff.I should introduce myself.My name is Maryanne,I have the best husband ever,(second time lucky) We have a 7 yo girl, a little man who is 14 mths and a special bub on the way.(due in oct) I just wanted to get my feelers out there to see if I could talk to someone/anyone who knows about cleft lip/palates,maybe you've been through this?
We found out at ou 20 week scan that there was a slight defect with our babies lip,not sure about the palate yet, have to wait untill 32 weeks for another look at bub.It was a huge shock for us.Been looking up info on the net with hubby.Still very unsure of what to think or whats going to happen.There is not much support around here.we live on a huge farm.I think the only support group is at the childrens hospital in Melbourne which is over 3 hours drive.I haven't contacted anyone yet.
love to hear from you. * Maryanne*

Hi Maryanne,

I'm not sure if i can help but i live near Tamworth NSW, A lady that I know had a little boy with a cleft palate fairly bad they had a few operations done when he was born and know he is a beautiful little boy with no probablys at all. I can't tell anything about the operations but it was pretty hard for them to get use to it. He just looks like a normal little boy now. So try not to worry its amazing what the doctors can do now.

hi my son is six months old and was born with a cleft lip. we weren't expecting it as it wasn't picked up by my scan so BIG shock for us when he was handed to us in hospital. didn't know what to expect. lucky for us there was no palate involvement so i have been able to breastfeed normally since birth. he was operated on at about 3 months old and 3 months on his lip is starting to look good. the operation was one night in hospital and one week with stitches and two weeks with arm splints so he couldn't pull out stitches! in queensland there is an organization called Cleft PALS QLD Inc and they have a website they are based in brisbane but the lady i spoke to was wonderful i will include her phone number and maybe she knows of someone else who is closer to you. (07) 32045412 hope this is of some help and not to worry as it is something easily fixed these days as my partner said we were glad in a way that we did not know as we would have had six months of needless worry.

Hi there,I am also new to the forum and like you,we have a cleft baby on the way (in Nov) I live in SA in the country and we will be going to Adelaide now to have our baby. Like you we are a bit tense about the whole thing but it would be great to keep in touch. From Dal

Hi Kelba,thankyou for your reply.It is so great to hear from other parents experiencing the same as you,it really makes you realise that your not the only one! It was music to my ears when you say that you are breastfeeding your son,that is very important to me. I rang the phone number you gave me.The lady was great and she put me onto the cleftpals group in victoria which was excellent.Since phoning them they have given me some other contacts,so thanks again.

Thanks so much for your reply.I am overwhelmed by the letters I have recived back,although not many they have been of great support.
Have you been finding out heaps about cleft babies since you found out about your baby? We got a bit off the net but I would feel better to get some support closer to home.I have got onto the cleftpals group in victoria which was a great start and They gave me some other contacts which I am yet to follow up on.We still dont know what kind of cleft our baby has and our doctor wants us to wait untill 32 weeks to find out a bit more.The midwife told me we shouldnt wait that long to start making decisions,such as where to have the baby and how to get onto feeding equipment and other things.How are your plans going? I'd love to keep in touch too but at the moment I use hubby's computer ,so I dont have my own e-mail address.
My birthday is coming up in a couple of weeks and I have been dropping a few hints for my own computer !! So in the mean time can we keep in touch through parents exchange.Love to hear from you again Dal.

Hi Maryanne,

My niece was born at Melbourne's Mercy in May. She was born with a cleft pal. only. And it wasn't even noticed until she was 12 hours old. It was a big shock, but she is such a beautiful baby and perfect in every other way.

We have learnt a lot about the condition and treatment, etc. She has to have an operation at 9 months to fix and have stitches, etc. She will also have to wear arm splints so she can't put her fingers or anything else in her mouth and can only have them off for a brief time each day until they come out. My sister has to train her to use a sipper cup by then as she also won't be able to have a bottle during that time. You probably know all this by now, though. I am not sure about the problems associated with the lip only, but because of the cleft she also has to have a special bottle to use each feed to drink properly and you can get them from the Cleft Pal. Assoc. Vic or 2nd hand if you are lucky. They are expensive but work really well. You can only sterilize these bottles in Milton, so don't buy a sterilizer if that is the case. She does have other bottles to mix her formula in and store as these bottles are only small and hold about 150ml (I think) and that's not enough for a full feed after a couple of months. My sister also expressed for the first couple of months to supply her with the breast milk but was very time consuming especially with a 4 yo as well. So changed over to formula. My niece had to stay in hospital an extra 5 or so days as she wasn't gaining weight very quickly and they wanted her to regain her birth weight before releasing. Once home she powered on. She doesn't cry very loudly either. It's more like a pitiful meow. You can also hire the sleep apnoea monitors for the babies and apparently it is a good idea for cleft pal. babies as they are more susceptible to the condition. You can also pick them up 2nd hand every now and then. My niece is also hard of hearing due to the blockages in her ear and is now wearing a hearing aid until the operation when they will insert grommits and fix that altogether. She also has a few problems with milk coming out of her nose, but it doesn't even bother her.

I know all this sounds a bit much to take in. But you can get so much info from the associations and I believe it is better to be prepared then to be so overwhelmed with it after the baby is born when all these strange things happen. You will be able to enjoy the baby so much more when you know what is going on and won't be so panicked.

If you like I could contact my sister and see if she is willing to get in touch with you. You may be able to get some advise and contacts from her and I will ask her if she will be selling any of their equipment after the operation. You might have a use for it.

See what happens at your next scan and you will know then what to expect.

Good luck. They can do so much these days, you will never know.

If you would like to get in contact with her let me know and I will talk to her and pass on your details and then she can contact you if she would like to talk to you.

Ange.

Hi! Maryanne.
My name is Nicole and my 6 month old son Lachlan was born with a complete bilateral cleft lip and palate in april this year.
He had his lip repaired in August and is booked in to have his palate repaired in February.
He was laughing and smiling a day after his lip repair and coped extremely well afterwards. The doctor he had (dr hayward)didn't believe in arm restraints and encouraged us to start feeding him as soon as he woke up.
Unfortunately i wasnt able to breastfeed my son but i still feel we bonded very well, we had to use a special pigeon teet and squeeze bottle to feed him but apart from that he is no different to any other baby.
I hope everything goes well for you and your baby.
GOOD LUCK

Regards Nicole.

hi maryanne i was just thinking that you must be getting close to the 32 week mark and was wondering if you have had your scan yet? if you have how did it go? if not let us know how it goes. my little boy is eight months old now, five months after his operation and looks fantastic. we had professional photos done at six months and anyone who saw them and didn't know about his lip asked if he had a bit of a runny nose !

Hi Kelba.sorry it's been a while.you know what it's like to get some time out when you're a mum!!
Yes we had our 32 week scan and to our surprise
(and disbelief) we were then told our baby did not appear to have a cleft of any sort. We were speechless and did'nt know how to react to this news.When hubby and I got ouside the hospital doors we just hugged and cryed together. In a way I felf a bit angry and hurt that we went through all that emotion,not only us but our families too,as we wanted them to be prepared.I am so greatfull for all the support we got and thanks to everyone who replyed to my letters.11 days ago I gave birth to a beautiful baby girl.the first thing I did when she was placed on my tummy was put my finger in her mouth to check for a cleft!! we named her Millicent Margaret and she weighed 8lb 11oz.we are very thrilled.This experience has really made us realise how fortunate we are to have 3 happy and healthy children and we have decided 3 is enough!!(for now)
I am so glad your little man's opp went well and the photo's must be great to have.All the best of luck with his future. from Maryanne.

congratulations to you and i am so glad everything has turned out so well that is definately not the first time i have heard of people being told of birth defects from scans and then having 'normal' babies

my husbands brother had boy withcleft lip and palate about 10 yrs ago they also foun it othe scan kyle did well during the ops but ws hard for his parents to see him after surgery as he had to hve his arms iin splints so he couldnt rip off the bandages tc but he recovered well now he has to hve a bone graft ibto his jaw good luck my inlaws jined cleftpals which helped with info and supprt try thm good luck