Cleft Lip and/or Palette

Thanks Leesha

Our pre-op appt is tomorrow afternoon - so I should know more then. Hopefully that will eliminate some of the 'unknown' factor...

He loves his books - sits there turning the pages like he's reading! Both DH & I are big readers and book lovers (I'm sitting in our library with probably more than a thousand books now), so he's bound to catch on! Most of the other toys he likes to put in his mouth...

He's developed a snuffle today so I'm hoping it's cleared by morning otherwise they may postpone surgery - which will put me on a rollercoaster of despair. So fingers crossed everyone!

I realise that we just have to grin & bear it for a while. Just hoping he's back to normal in a couple of weeks and we can get on with life. Be glad when he's recovered to be honest...

Fingers crossed all goes well tomorrow afternoon Toni ... I am sure it will. We didn't do pre op or things like that as we had to travel so far - I am sure you will be relieved once over. Just looking at you photo at the bottom of your post - aren't htey getting big??!! Alex has just cut his fifth tooth (so far so good there as they told us to expect the unexpected) andhesays Mum (quietly happy about that) :) Good luck and big hugs to Liam.
Del:clap:

Thanks everyone for your support.

Appt went well today - all my questions answered.

Surgery only takes an hour... the intern who interviewed me (best way to describe it really) pulled a funny face when I mentioned surgeon's glue! She'd never heard of it and said 'it's not used here'. So splints it is... for 3-4 days, they reckon. For most of that time he'll be pretty sedated or drowsy so hopefully it won't be a huge issue.

Had a tour of the ward - looks lovely. I have hope that DH will be looked after as he's staying in with Liam during his hossy visit. I have to go back to work on Wednesday but have the following week off for when he comes home.

One of us will get to hold him while they put him to sleep in theatre.. we haven't decided who yet. But I'm glad we've got the option.

He has to fast from 6am, so we'll get him up at 5am and feed him - at the hospital by 11am so we're kinda hoping that will distract him from being hungry... Apparently the surgery only takes an hour so it should be all over by evening.

I'm feeling a bit better now. Only nerves left to kick in over the weekend! :doh:

*bump* - my post didn't register with the subscriptions!! :bump:

Was coming in to fill you in on Kanes surgery, and Harmony woke up.... :doh:

BBL....... :D

Oh good! Will check back reguarly to see if you've had a chance to do your post..

Ok hon, quick run down....;)

I let Ad take him in, I was already a blubbering mess... glad I did, Ad said its really upsetting watching them go out to it... so just be prepared....

took about 2 hrs, but we had another lip reapair and grommits....

when we got to see him, he was trying to scream, but his little voice was all hoarse, and it was very bloody all over his face....

he took his bottle straight away, and fell asleep on my chest for a while...

he was EXTREMELY clingy, couldn't put him down to change his nappy!!

I was warned he will probably throw up all the blood swallowed during surgery, and he did, heaps, and I cried again.... but he felt much better afterwards and settled well...

after 10 hrs we asked to get the drips out and give him morphine by mouth, and they did... no drips or cords or anything!!! :dance:

he wasn't interested in food, so had different liquids... sustagen, milo etc...

left after 24 hrs and drove 6 hrs home!!! He done so well, I cried the whole time and Ad was great!!

Took a few days to even get custard into him, and he lost 2 kilos in that week, but he eventually started back up, and within 2 weeks was back to eating heaps (soft stuff) and within 4 weeks back to normal diet!!

Had pain meds for about 2 weeks.... Make sure you get some scripts from the hossy... we had to take him back to our local hossy for pain meds, but they had to confer with Westmead and it was all a hassle... but he was great with the meds, and we just slowly took him off them....

Ill jump back on if I think of anything else..... :D gotta go... she's hungry again.... ;)

Thanks Jodie - that's a big help.

It seems I'm taking him in to theatre, so I'll do some mental preparation... however you mentally prepare for these things! :dunno:

I'll get DH to read all this too - the blood will probably be upsetting for all of us... :cry:

I just know life will never be the same again...

Got to go - he's stirring... thanks again everyone. :grouphug:

Toni.....bigs hugs for tomorrow!!:grouphug:

Will keep you in my thoughts and I know everything will be fine!!!

Let us know hen you have time and feel up to it how it all went!!

We will all be thinking of you!!

xoxoxoxoxoxox

Thanks everyone for your fabulous support.

I'm beginning to feel trepidation, but I know there's nothing I can do that I haven't already done.

Thankfully the Nappy Hunt begins today so DH and I are going to spend some doing that this afternoon to keep our minds off it. If you don't know about the Nappy Hunt - go to diaperdecisions dot com - you hunt for icons on websites... good fun!

I've got some rescue remedy and valerian for myself and got the Brauer recovery tonic for Liam ... hopefully that'll keep things under wraps!

Will let you know the first chance I get near a computer how things went.

*mwah*

*copied post*

Surgery went well. The Drs are pleased with how it all went so that's always good.

Me? Well, I'm home - alone - and not coping too well. I feel like I'm going slowly insane because I've left my boy in hospital (and my Husband) and this is the first time since he was born that I've spent the night away from him.

He's been quite clingly and dependent and neither of us got heaps of sleep last night (about 5 hours each - broken up) - as Liam will only sleep in our arms. So we took turns and switched every 2-3 hours. I feel REALLY awful that I've left DH there to deal with him while I'm home (have to go back to work in the morning) and I'm missing Liam like nothing I've ever experienced before.... haven't stopped sobbing since I left the ward!

I'll go back each night after work (around 1hour drive each way) and if I'm this unstable at work tomorrow, I might even be able to call in 'sick' to go early... I'll see what happens after a night's sleep.

On the upside (yes, there IS one!) - we got permission from the head Plastic Surgeon to use the haberman bottle to give Liam a feed around 6pm tonight. We tried to spoon or syringe feed him this afternoon (they don't want anything in his mouth) but it just really upset him as he's not used to it and didn't swallow reflexibly - so he panicked. He ate some pureed apples on a spoon, but the milk (formula) is what he really wanted. Also - the sucking action really comforted him. So we can now settle him easier and he has been playing and smiling as well as grizzling and crying!

Hopefully in the morning the pain management team will assess him not needing the morphine any more (he's on the minimum dose now) and we can remove the drip and oxygen and have him tangle free!

The splints on his arms are ticking him off a bit - but that's a small thing to deal with for now. They should come off in a few days.

Here's hoping DH has gotten him to sleep in the cot and is having some well earned sleep right now... Can I hear a 'Hell yeah!'??

Thanks again for everyone's support.

Oh honey...:hug:
You've done amazingly well!!!

I stayed with Kane, and sat there and cried and cried nearly the whole time too...

So glad he can have a bottle now!! :dance: Since Kane had the glue, he had it in the recovery room... I always wonder why there are so many different techniques around?? I think its done differently in qld too, and earlier...

You'll love it when the drip comes out... you can wander the halls with him and keep him occupied much more easily...;)

I'm sooo glad all is well... chin up babe, cry all you want, and wer'e always here hon.... :D

Thanks Jodie... I cried buckets yesterday and had a few teary moments this morning at work. Plus it's the 10th anniversary of my Mum's death today - just to top it all off!

He got the drip and oxygen off around lunchtime today and has been almost his normal self since. Playing, crawling and doing some sleeping!

He even slept a few hours at a time last night in the cot which is good because that meant DH could get some decent stretches of sleep in the bed. Yay!

Apparently the 'plastics' team (the surgical team overseeing his operation and recovery) are quite astonished at his recovery. They were even talking about discharging him tonight - but didn't get around to see him in time. Hopefully they will assess him tomorrow and all being well, I'll have my boys home tomorrow! Hooray! :hooray:

However, tonight he was fussy with the bottle and then did some funny faces before spitting out a clump of what the nurse called 'packing and a stitch'. She said it happens all the time - but we were concerned that there's a problem - so we'll see what they say when they visit him tomorrow.

Well - best get to bed... another day of work and hopefully a pickup from hossy tomorrow! Keep your fingers crossed!

HE'S HOME!!!

My little man's done an amazing job at recovering and he was discharged earlier this morning. Was home by 1.00 pm.

He's been a bit wingey and clingy - but that's all to be expected. You should have seen him in the car on the way home. Smiling and talking - he knew he was going home! :clap:

Am heading to bed now...

Ohh I am so glad to hear that it all went so well and best of all he is HOME!!! Yayyyyyyyyy
The hard part is over now hun!!!! ;)

Just think no more food coming out of his nose!! Great stuff!!!!!:clap:

You guys have done soo well to get thru it all amd what a trooper being discharged already!! Aren't they stronger than we think? :clap:

Gotta Go Taj is playing up tonight and not wanting to stay asleep......first 2 teeth have come thru and he is crawling backwards so is forever sitting up in his cot.....Soo annoying!!

Toni just checking in to see how Liam is going??? And how you are both going also!!!

Hope everything is healing and life is getting back to normal!!!

Taj is finally crawling forwards...yayyy....now he is into everything!!

Hi Leesha

He's doing great! He got a check-up with the surgeon last Thursday and got the splints off - which I reckon could've come off 2 days earlier...

Since then, he's been almost back to normal. Just getting the sleeping patterns settled down - which is the last thing to return to normailty..

We had a really rough night on the Friday night after we brought him home... reckon we had 2 hours (broken) sleep all night. Silly us - we decided to do it all together for support... so neither of us was human in the morning! We called on the in-laws on the Saturday to come & help and they looked after him while we had 3 hours kip... Yay for them!!

He's eating now which is fun! Mostly bread & some fruit... thinks it's a great game!

Hello everyone,

I just stumbled accross this website and wanted to join so i could introduce myself and share my story. My name is Simone and my son Aden was born on January 17th 2009, nothing had shown up on my scans but immediatly after my son was born one of the midwives noted that Aden has a soft palate cleft. He was fed with a feeding tube for the first 24hours after his birth but after an examination by a pediatrician we were able to try the Haberman bottle and he has taken to it just fine.
My understanding is in the scheme of things his 'hole' is not too bad and we have already met with many of the team at RCH Melbourne who have explained the surgery that will occur down the track. He has already developed fluid on his ears and will definetly need grommits, his hearing is also being monitored regularly at RCH and unless they deem it necessary to put the grommits in earlier they will do it at the same time as his cleft op. His hearing was fine at birth so we have been reassured that no long term damage should occur, its just that the fluid there now makes things sound muffled to him like he is underwater or on an aeroplane for example.

I have loved reading everyones stories on here and find it really comforting to know that other parents have the same worries and fears about their little bubs having to endure operations at such young ages.

So Aden is only 10 weeks old now so we certainly are not expecting anything to happen until at least near the end of the year but I really would love to hear about anyone elses experiences with the RCH, So far we have found all of our dealings with them excellent. Its also fantastic to hear your stories about starting solids, we have been so worried about how our little man will go and deal with the possibility of food coming out of his nose, But it really is amazing that they somehow realise to push it back into their throats, Once again I know thats still a fair way off too.

Anyway this is our story so far, really look foward to sharing more of the ups and downs. Thankyou all so much for sharing your stories its great for me as a first time mum to hear and be able to seek support and advice.

Just a quick Welcome lionsimone!!! You will find much needed support and advice in here!
Ask any questions you have and we will all endevour to help you out as best we can!!

I have been dealing with the RCH for the last 8 months and have nothing but praise for the team there...they are fantastic....you are all in good hands!!

Will chat later.......Taj is demanding attention and it's bath time!!!

Welcome Simone!

Feel free to share in here - we're quite a supportive lot (as you might have read) and no question is silly...

We really haven't looked back since the op and my DS is happier than ever!

If you need some spare parts for your habermann - let me know. I have some collars, disks & membranes along with some of the bottle bases. No teats spare unfortunately!

Got to go.. he's stirring!

Good luck!

Thankyou Ladies for your kind welcome, It really is awesome. Im so glad that you guys have had really positive experiences with your babies ops.
We had another appointment at the RCH last week & are having another hearing test done next month, We have been advised that to help with Adens hearing it may be best to have him fitted with a headband that has a box at the back that allows sound to bypass his ears and send clear sound to him - have you guys ever heard of this or had it?? They like it to be fitted when bubs is around 5 months and keep until his palatte is repaired and grommits fitted, That way he wont miss any sounds and therefore help with speech later on. Will know more about it after the next hearing test.

Like you guys I think of my little man as absolutely perfect, I get a bit dismayed at the way some people take the news when I explain what Aden has..I get the oh you poor thing as a response at times and it really erks me, Seriously what is wrong with some people.

Nettie it would be great to take those Haberman spare parts of your hands, Let me know what you have and how much $$ you would like and i can transfer the money to you, that would be awesome.

Hope that your all having a wonderful easter with your babies and families. Xx

LIonsimone: I tried to post this to you in a private message, but you're not able to receive them??? So here it is:

Hello!

All I have left is 2 collars (the rings that hold the teat onto the bottle), 3 disks with membranes (the thing that goes in the teat) and lots of bottle bases but no teats.

Let me know what you'd like and I'll send them to you (if you can give me your postal address!). All we ask is that you don't sell them for profit even when you're finished with them. We bought a bulk lot of a Mum in the US who asked us to promise not to sell them for profit, so we ask you too.

We won't charge you anything unless the postage is expensive. We're happy to pay basic postage and won't charge you anything for the bottle parts.

Look forward to hearing from you.

Regards

Toni (Nettie)

If you'd like to Email me, my email address is lewchips1@ozemail.com.au

Hi Guys
It's been a while since i have been on here - busy busy ..... and ongoing network issues - :) Good to hear you are all doing well.

Welcome Simone - as everyone has said, this is a great place to find info and get support. It's great that Aden is doing well.

Toni - well done getting htrough everything - so happy that all is well for you guys. Liam is a champion :clap: Happy Birthday to Liam by the way too - thought of you guys on the 17th April when our boys turned one ..... they are growing up fast.

Jodie - I have wondered why the timing and technicalities vary so drastically from surgeon to surgeon let alone state to state too. Sometimes it seems like there is very little concensus on anything. the info and stats even vary from place to place. I am quite interested in this as it seems to make quite a difference to the 'difficulties', I am unclear if it makes alot of difference to the cosmetic outcomes??!!?? amoungst other things. Also interested in getting more involved in Cleft Awareness etc too as it seems that many people (around here at least) are still not sure about what clefts are or what they involve and cleftpals is based in brissy so not really a big influence. There are 3 of us up here with babies similarly aged and I have just made contact with another lady whose boy is older, but we have very much had to find our own way (and we are all using different surgeons (2 in Brissy, 1 in Townsville and one in Sydney)so if anyone has info or can point me in a direction to start helping others please do - that would be great.

Anyway guys gotta go - we are off to Brissy again in a few days for hearing tests, ENT checks and a speech assesment so lots to get organised.

Cheers

Del

Hey there! Nice to hear from you!

Hope everyone is doing well.

It might sounds kinda funny, but Liam was being a bit of a goose in the bath tonight and was sort of 'cheering' at the ceiling and had his mouth open. I could see in and I noticed that the surgeons gave him a dangly bit at the back of his palate! I asked about this when we at 'cleft clinic' once and they said that it serves no purpose and that he wouldn't have one - so it surprised me!

He's just learnt to clap hands and is just so darn proud of himself he just has to applaud - and then check that we're applauding him too! Very cute!

He had his ENT follow up (from the grommits being put in during cleft repair surgery) and the fluid has all drained - yay! Anyone else have the issue of travelling for more than an hour (I know Jodie... ;) ) then waiting for 40 minutes before getting into the appointment for five minutes before driving another hour and a bit home??? Couldn't someone local have peered in his ears??? Sheesh!

Too Funny Toni - Yay Liam. Alex has learnt to blow his nose .... sounds daft but I was VErY excited LOL. He also has learnt to climb ( a few weeks ago) but is quite happy not to walk on a regular basis ... just when he feels like showing off to get that applaud .... then (instead of clapping) he does a little dance :)
As for the travel and then the wait for the 5 min appointment ...... have to admit we haven't waited too much (although we have cleft clinic when we go away next and last time that was a 2 hour wait ... thankgoodness we don't have to do it too often) but we do a 1 hour drive to the airport and then a 2.5 hour flight ..... and of course we ALWAYS get to land just as peak hour traffic into the city starts .....looking forward to it again next week ... NOT. Seriously though - have wondered myself why there are not more people capable of doing at least check ups etc seeing as so many kids are born with some type of cleft??!!

it's so nice to hear that everyone was doing well, specially your babies...

Hi girls!!

Glad to hear everyone is well and great to hear Liam is doing fantastically!! They are so resiliant aren't they???
I contacted Cleft Pals and became a support parent so if anyone needs someone to talk to I am there to lend an ear or some advice!! Especially in my area there isn't very much considering it is such a big town and I have now come across quite a few cleft kids in the past 12 months!!

Can't believe it has been 5 months since Taj's operation already!!!! He is becoming a real little boy now...my baby has gone!!!!

I can't get Taj to drink from any other teat other than his haberman teat which is frustrating cos they are so damn expensive!!! I thought after his lip repair he would just use another teat!! Just wondering if anyone else has had the same problem? I guess it's what he is used to!!

Leesha - we're still giving Liam his habermann's. Only because we have 8 of them and be buggered if I'm buying new bottles! I don't quite know how to teach him to 'suck' though.. I'm sure he's not really using the 'sippy cups' properly. He just gets the drips...

Oh - and welcome Gabrielslife!!! Have you posted before? I'm a bit forgetful sometimes, so please forgive me if I've forgotten! If you haven't - please tell us your story!

HI Guys

Not sure if this helps you but after Alex had his palate op we used the cleftpals squeeze bottle and NUK top. I am not certain but I think the bottle is a qld thing??!!?? so if your branch of cleftpals don't sell them qld definately do. (NUK spout is like a sippy cup spout but there are two sorts - a slow flow with holes and a quicker flow with a slit). I found that after only a few feeds where I squeezed, he just naturally began to suck. The set is about half the price of the Haberman (which we used up until the palate op) - only prob is they melt easily so just sterilize in boiled water. I found them really useful. Alex now uses run of the mill sippy cups (Nuby type is his favourite - also good for learning to suck I found) for water but prefers the quick flow NUK for milk still - guess it is just a comfort thing. Hope this is of some help.

Glad to hear all bubs are doing well. We are off to Brissy tomorrow ... first speech therapy assesment, hearing test and ENT check to see how the grommits are going.

Cheers

Del

Hi Ladies,


My name is Nicole and I just found this site and love this blog. I have a 11 week old baby girl who was born on 19th March 2009 with Pierre Robin Sequence (cleft palate and small jaw). We spent almost 2 months at RCH but are now home and happy. Her only issue now is feeding. She has a NG tube and has been struggling with the Haberman. She has about 50ml once a day if lucky(total feed is 150mlx5). Yesterday we had a check-up at RCH and speech dept gave me the chu chu cross cut to try. She likes the teat better but is not getting a lot of milk out of it. I was thinking of getting a squeeze bottle or the trying the pigeon teat. There is also a chu chu easy feed teat which I may try.

I really want the NG tube out and would love any advise or to speak with other mums of PRS

Regards,
Nicole

Hi Nicole,

My daughter has just turned one and has Pierre Robin Sequence, she also has a chromosome deletion, she was in the RCH for 3 months and had jaw destraction surgary performed at 9 weeks. She is still, unfortunatly, being fed via NGT, it is very frustrating. We went through a stage at about 4 months were she was feeding really well on the habermann and she went 2 and a half days on oral feeds only, she then became sick and went backwards, now I am lucky to get 20mls a day into her. She is starting to eat solids though and we are working with speech and dieticans at the childrens to try and get rid of this tube. Matilda is currently on 3 milk feeds a day and our next plan is to cut out her lunch time milk and hope that she will get hungry and eat (I know it sounds mean, and I hate the thought), once she is eating solids properly they seem to think the drinking will follow, as with us it has not stepped to the next level.

My dinner is ready so I have to go for now but if you would like to talk more feel free to email me: dee_joint@ hotmail dot com
I am happy to talk on the phone also but I do not want to put my number in here so email me if you like :D.

I am in the RCH fortnightly for physio and speech, we have proberly crosses paths!

Best of luck.
Deanne.

Thanks Deanne,

I would love to talk more and have emailed you. If you don't get it let me know because it said invalid address. Sent it to dee_joint@ hotmail.com

I did forget to say in my email to not feel bad about letting Matilda go hungry. I often wanted to let Summer demand feed in hospital but they said no. To me it seemed she was never hungry enough to feed via a bottle. You need to do what you need to do and if she was really hungry she would let you know.

Regards,
Nicole:D

Hi Nicole and Welcome!! :hug:

My son Liam was born 17 April 2009 with a cleft of the hard & soft palate due to PRS. His lip and gum are unaffected and it appears his teeth are unaffected (he's now got 6).

Liam fed via tube for the first 3 days, while we were teaching him to use the habermann. Once he was using the habermann completely (I made sure I did every feed in hospital so that I didn't use the tube but persisted with the bottle) - we removed the tube which was on about day 3. We were allowed to leave the hospital on day 5 after his weight increased.

So we haven't had too many issues and he has had his repair surgery which went very well - so now he's pretty much a normal kid.

I hope we can all be of some assistance to you - and as you can tell, we've all got a different story to tell! Did you know about the cleft before Summer was born? I didn't with Liam and it came as quite a shock. Luckily we have a good friend who has a cleft (lip, gum and palate) who was pretty much a pioneer baby with reconstructive surgery in the 70's... Because of this we weren't completely unfamiliar with the condition and he is a very special 'Uncle' to Liam!

Regarding your current problem of feeding - the squeeze bottle sounds like a good option. Liam learnt to use the habermann through us squeezing it - until he learnt how to do it himself...

All the best of luck and feel free to come in here and rant or unload if you're feeling overwhelmed - 'cause, you know what? We all went there... and will probably know how you feel. :lol:

Hi Nicole and a big warm welcome!!:dance:

I don't have any experience or advice about PRS but I am always here for support or an ear that listens quite well!!!!

Taj was born with a bilateral cleft lip and gum but no palate! He has had his surgery and is looking fantastic!!

We use the Haberman bottle which we started to squeeze but he just started sucking all by himself. He is still using the haberman teet to this day and he now chews holes in them...not happy jan..lol!!:rolleyes:

Anyhoo feel free to chew our ears off and I'm sure the girls will have loads of advice for you!!!

Can you all believe Taj is One next thursday???? My baby is all grown up.....You have all been a fantastic support throughout this journey!! Kisses to all!!!:kissing:

Hey nettie I think you mean liam was born in 2008!!!

LMAO at six teeth and he is 2 months old.......hehehehehehehehehehehehe

:rofl: whoops! Thanks Leesha!

Yes, he's 13.5 months old now - so that would be 2008!

Hi ladies,

It was nice to read your messages today. I am having a bad day. Don't have them very often, maybe once every couple of weeks. Summer had a couple of large vomits last night at the end of her feed and her tube came out. Stupid me tried to run her feed a fraction quicker to see how she went. I got my answer.
Anyway I just left it out for the night because she is a good sleeper. In the morning I thought I would try and bottle feed her a little before I put the tube back in. She didn't want to suck much. Then this morning it took a few goes to get the tube back in. She was soooo upset. Then I get upset. Its back in and she is fast asleep but today I am just sick of her PRS. I think it would be so nice just for one day to have a positive bottle feed experience and see her with no tube

Today I am in tears but tomorrow I will be ok.

Nette I can't believe Liam only had a tube for 3 days. Sometimes I wonder if we gave Summer more of a chance to bottle feed she wouldn't be so dependent on the tube. Anyway congratulations. Did he have a small chin which comes with PRS? Our problem was more her breathing than the cleft.

I had no issues with my pregnancy and didn't have any idea. They told me at birth Summer had PRS. I had never heard of PRS or clefts.

Wow it seems like our little cleft babies are all growing up so fast. Matilda turned one last Thursday.

Nicole, I am sorry you have been having a bad day, it is very frustrating and sad when they vomit and in turn throw up their tube. I too had to put a new tube in last night, Matilda has got to the age where she tugs at it and the tape somes lose or sometimes she hurts her poor little face, she looked so lovely without the tube, I didn't want to put it back in either.
Matilda is pretty good with getting the tube down these days though, no tears anymore, however she has learnt to block my path with her tounge and the tube ends up poking out of her mouth, so I have to distract her with a dummy.
Things do get easier, even if she is still on the tube, as much as I would love the tube gone, it is easier now that she is a little older and we have got used to the whole thing.
Big :hug:, as you said there are good days and bad, I hope tomorrow is a good one for you.

Hi Nicole (welcome) and HI to all you other lovely ladies

It has been a while since I was on here so just htought I woudl see what you have all been up to. We have just been back to Brissy for Alex's second set of gromits. We have another hearing test scheduled in a few weeks which will hopefully now give a much better result than the last (with the old gromits). How are all your brave boys and girls going??

Nicole, I do not have any experience with PRS - Alex was born with a complete unilateral cleft lip and palate (he actually had next to no soft palate). We also had breathing issues at first but they thankfully sorted themselves out quickly. We did use the squeeze bottles for a while. Alex was a habermann baby until after his first op and then we had to use a hard spout. As he had no palate (and now no plate) he couldn't suck so we had to combine this with the squeeze bottle. It took probably a good week to get him used to just swallowing the amount squeezed in. It took practice for both of us (and was quite messy and very frustrating at times - I think I woudl waste twice as much as he took at first) but we got there in the end. I guess all I can say is stick with it chick - you're doing a great job and it is totally normal to feel the way you are feeling sometimes- I think it would be fair to say we have probably all had our moments. Hope it helps a bit to have these sorts of forums available to chat.

Hi Girls!!!!

Been awhile since I've had a look see in here and it's been pretty quiet!!!
I have a question I hope someone can answer for me!!
I can't seem to get a consistant answer out of anyone.....

What are your chances of having another cleft lip and or palate child?

There is no family history of it on either side and all taj's chromosome count was normal (had an amnio) We didn't have genetic counselling as we didn't think we needed to and they even said if there is no family history then they can't really give us a correct answer and there isn't a test you can do to test for it!!

I hear it's around 4% is this correct???

Can anyone give me some of there own advice or info??

Hope you are all well!! Because it's so quiet i'm guessing you are!!

Cheers!!!
xoxoxoxo