Any mummies with cleft lip & palate babies?

[moo2]

Hello ladies,

My little blue bundle George Anthony was born on 6th March weighing 9lb 4oz. He's adorable though I may be a little biased!

He was born with a complete bilateral cleft lip & palate. It wasn't detected during pregnancy so was a complete shock when he was born.

Now we have got our head round things we are just trying to carry on with life as normal and enjoy our new arrival taking each day as it comes.

Just wondered if there were any other mummies on here whose babies have Georges condition? Thought it would be good to support each other through the long journey ahead...?

Vickie xxxx

 

[bex]

Hiya hun. My daughter Niamh was born on 25th november with Pierre robin sequence. (not sure if you've heard of it) Her jaw hasn't grown properly in the womb, which has forced her tongue up causing a cleft palate. Pierre Robin can't be detected on a scan and we have no family history of clefts. Niamh's cleft wasn't detected till she was 2 days old as she wasn't feeding. I was totally devastated. I was trying to breastfeed but its impossible for a pierre robin baby to breastfeed.
Niamh was born at home but we ended up in hospital till she was 10 days old. Niamh was also tube fed till 6 weeks ago but she now has all her feeds orally using the squeezy bottles from clapa.
I take it George will be going to birmingham childrens hospital? Thats where Niamh goes. Our cleft nurse Michelle has been great. She visited weekly to begin with and now Niamh's NG tube is out she doesn't come quite as often but rings every week.
We have been given a date for Niamh's first surgery, 7th July where they will close her soft palate then her hard palate will be closed afterwards.
I have found good support from a forum called faceforward which is especially for parents of babies/children with clefts. If i have any questions instead of phoning the cleft nurse i often post on their for advice.
If i can help you in anyway then i will. After Niamh was born i felt so alone, as no one around me knew how i felt (apart from my hubby, who has kept me sane!) and i felt like i didn't fit in any where. When Niamh had her feeding tube in i hated going out as i got 20 questions from well meaning nosey people!!
Also i've had to start weaning Niamh! Thats an experience!! As fast as i'm putting the food in it comes straight back out of her nose!!!
I still have bad days when i think why did this have to happen, what did i do wrong but its making me a stronger/confident person. At the moment my life revolves around hospitals/doctors/dentists/nurses/health visitors but it won't be forever and everytime Niamh gives me a big smile it makes me realise she is so worth it.

 

[moo2]

Hi Bex, thank you so much for your reply
What a small world!

I have met Michelle, she came to visit us in neonatal. Our nurse is called Jo and shes been great.

I've never heard of Pierre Robin? I will google it! George has a complete bilateral cleft lip & palate. There is no history of cleft in mine or DH family either, it is often detected at the 20 week scan but it said on the notes from my 20 week scan that the face was not visible.

The neonatal nurses encouraged me to try & breastfeed George and even though he had a strong suck reflex he couldn't create a vacuum with his lips to get the milk out efficiently so I'm expressing milk and giving it to him with the squeezy bottles.

We were only in special care for 4 days then I begged them to let us out The consultant agreed as she was pleased George was feeding so well. His feeding tube was taken out on day 3 and hes had the bottle ever since.

Yes, George will be treated at Birmingham Childrens Hospital, we have our first appointment on Wednesday. His lip surgery should be carried out when he is around 12 weeks old then his palate at 7/8 months.

I know what you mean about not fitting in and nosey people, there is no disguising Georges condition and even after his lip is fixed he will still look different due to the severity of the cleft. I'm not really going out anyway as I'm expressing & feeding every 3 hours so it limits how far you can go.

I'll take a look at the forum you mentioned, it sound good thanks.

No looking forward to the messy weaning....

I'd love to keep in touch if thats ok? Its good to know you're not alone...

 

[bex]

Hope you get on ok on wednesday at BCH, we go next wednesday!! So just missed you by a week! The cleft clinic is always on a wednesday and is very well organised. We went for the first time on new years eve and saw lots of different people during the same appointment. Have you looked on the website for BCH? They have info and photos of all their staff so you get to see who your meeting. Niamh's plastic surgeon is Miss Rona Slater and she was really nice.
Well done for expressing, are you borrowing a pump from the cleft nurses? I borrowed one from them but only managed to express for 4 weeks. I stopped on christmas eve! I found it exhausting and so guilty when my 4 year old asked me why i never played with him anymore. Something has to give and unfortunately it was expressing milk. Don't think people realise how much hard work it is.
Which teats are you using? We've tried all different ones and found Niamh is best with orthadontic teats from clapa. I've got a few packs of the vented orthadontic teats that i got by mistake, let me know which ones george is using. Will be in touch soon. P.s are you on facebook?

 

[moo2]

Hi Bex, Happy Easter

How are things? Hope you and Niamh are doing well...

Sorry for not replying sooner, it seems to have been a hectic old week!

As I said we were at BCH on Wednesday, Miss Slater is Georges surgeon too! She is happy with his weight gain etc and said his first op will be in June, just waiting now for a date. I feel so sad our LO's have to go through all this when they are so small but at least they wont remember. She said George will need surgery up until he's around 20 years old but the later ops will be mainly cosmetic to make sure he is happy with how he looks.

Yes I'm borrowing a pump from CLAPA which is great. I must admit I'm finding it really hard to keep up with the expressing but I'm producing twice as much milk as george needs each day at the moment so I'm freezing loads. If it does really get too much at least he'll have this to keep him going a bit longer. I was hoping to get to 6 months before I stopped but I think now that's unrealistic. It must have been really tough for you looking after your other LO as well so a big well done for doing it for 4 weeks.

I'm using the regular orthadontic teats from clapa too, I don't know what the vented teats are? Do the squeezy bottles hurt your hand? I've developed really bad RSI from squeezing the bottles, holding the pump in place and the upright position I have to hold George in to feed...

I'm so useless with technology! I have put my self on facebook but I don't realy understand it... I never look at at it and I've only got my DH and an old uni friend on there... I must make an affort to figure it out.

Right, it's feed time again... Have a great day and I'll catch up with you soon. Hope Wednesday goes well.

Vickie xxxxx

 

[bex]

Hiya Vickie, glad your appointment went ok on wednesday, i could cry everytime i think about what Niamh has got to go through and i often worry how i'll cope but as always i will, its strange how you do.

Yes, my hand kills everyday and my back used to kill me from leaning over holding the pump on. I did make myself a holder to hold the pump in position! I got an old bikini top, cut small holes in it then put the funnel things in and it meant i could pump hands free so i could at least use the internet or read. I wasn't producing enough milk though and would only have enough for 2 of Niamhs 8 feeds. so well done you for having a stock in the freezer.

My RSI does seem to have improved after 20weeks of squeezing milk! So hopefully yours will aswell.

How strange that our little ones have the same surgeon. Niamh will need 2 ops for her palate and then it will be up to her if she wants any ops on her jaw when she's finished growing. It was a real shock to me at first to realise that we'd be going BCH for the next 15 years, then Niamh's care will eventually be transferred to the adult hospital presumably like george will.

Don't worry bout not replying i know how hard the pumping and 3 hour feeding is! Niamh isn't even going 2 hours at the moment!

Will let you know how wednesday goes, take care and enjoy the nice weather x

 

[XO notorious]

Hi my daughter was born oct 30, 2008 and has a cleft palate only. Also hers was not detected during pregnancy. I had a number of ultrasounds 3 and 4d! How is your baby lfeeding? I use a haberman feeder and its great! Pm me if u feel!

 

[moo2]

Can't believe it's been so long since I last posted - only seems like a few days ago... The time is flying by so quickly!

Just wanted to say George has his first operation booked for the 29th May, he'll be exactly 12 weeks old. I've got such mixed emotions about it

Hope things are going well with Niamh Bex? She looks like she's really coming on from her new pic. When are you next at BCH?

Do you have any contact with CLAPA Stafford?

I have made myself a similar 'device' to your bikini top from an old bra and it has really helped with evening and late night sessions but theres not enough support to wear it all day. I fell asleep with it on the other night while expressing woke up with the bottles overflowing and nipples the size of my big toes! 5 minutes longer and I think I would have been sucked inside out

I'll catch up with you soon, always so much to do!

Vickie xxx

 

[moo2]

Hi my daughter was born oct 30, 2008 and has a cleft palate only. Also hers was not detected during pregnancy. I had a number of ultrasounds 3 and 4d! How is your baby lfeeding? I use a haberman feeder and its great! Pm me if u feel!

Thanks for the post!

Hope you and your LO are doing well?

Hard to believe they didn't spot the cleft on the 4d scan but I think its harder for them to detect the palate? We only had the standard anomaly scan at 20 weeks and it said on the report the babies face wasn't visible, a 4d scan would have picked Georges up for sure as it effects his lip, gum,nose and his complete hard & soft palate.

We are feeding him with squeezy bottles and latex orthadontic teats. He feeds really well using this method but he gets really bad colic as he can't create a vacuum round the teat and takes air each time he takes milk.

Has you DD had any surgery to repair her palate yet?

Vickie xxxxxxxx

 

[bex]

Hiya
Hope you and George are well.

Sorry i haven't been in touch, we've had internet problems.

We went to birmingham on wednesday 15th april. It went ok, they were very pleased with her weight gain, Miss Slator was suprised that her feeding tube was out, then as always there was a BUT! Niamh's cleft is so wide that she will need 2 ops, which we knew, her first in july then her 2nd a year after.

Its really hit me hard, i thought this nightmare would be over before she was 1 but now she'll be nearly 2. I kept myself together in the hospital but cried all the way back home!

I'm having a really difficult time weaning Niamh. We are going on holiday tomorrow for a week and i'm dreading having to feed her while we are out and about. I'll have to provide everyone around us with umbrellas so they don't get a puree shower from niamh sneezing!!!

However i'm feeling more positive this week. Its still early days with the weaning and i'm certain it will get easier the older niamh gets, its just the thought of having another 12 months of struggling with food almost tipped me over the edge!!

Well done you for expressing still, glad your little invention is working!!!! Its a good job you woke up when you did!!

Will be thinking of you on 29th may. I know exactly how your feeling, i feel physically sick everytime i think about it. Will you let me know how you get on and what the actual process and hospital stay is like.

Even though I'm confident that george and niamh will be fine and are in safe hands, it doesn't stop you worrying does it.

We don't come to birmingham again now till operation day, 7th july.

Take care

Becca xx

 

[moo2]

Hi Bex

Can't believe its been so long since I posted on here!

How are things? Hope you and Niamh are well?

Sorry to hear about the 2 ops, I know how you feel...
Miss Slater said it's unlikely they will be able to do the complete repair on George's lip in one go as his cleft is so wide and it will be several years before they do the second part. He is due to have his palate op at the end of this year or early next, then any palate and/or lip revision after that but its his bone graft op when he's about 8 which will be the most difficult to deal with as he'll be old enough to know whats going on.

Did you have a good holiday? Is the weaning getting any easier? We'll be starting that in 7 weeks....

George had his pre-op appointment at BCH last Wednesday... Only 12 days now until his op I filled up just going through the procedure with the nurse so I think I'll be a complete wreck when it comes to the day!

I'll let you know how it all goes...

Love
Vickie & George xxxxxxxx

 

[celine]

Hi everyone

I was born with a cleft lip & palate myself and have had the ops you talk about when I was a baby (ok it was years and years ago)
I had bone grafts done when i was 15 & 16 as the first one failed.

My dad was born without a nose - so there is some history in my family, im having a lil boy next mnth and so far nothing of that kind has been spotted on our scans - but I am always keeping an open mind.

 

[cazza1982]

Hi All,

I know it's been a while since this post was replied to, but just wanted to introduce myself really!

My little man will be born with bilateral cleft lip and palate which was diagnosed at 20wk scan.

I feel OK about it now, but getting a bit apprehensive in the lead up to birth. I am sure I will be of more use to you all once I have met the little fella and have gotten over the shock!

Hopefully speak to you all soon.

Big hugs

 

[moo2]

Hi All,

I know it's been a while since this post was replied to, but just wanted to introduce myself really!

My little man will be born with bilateral cleft lip and palate which was diagnosed at 20wk scan.

I feel OK about it now, but getting a bit apprehensive in the lead up to birth. I am sure I will be of more use to you all once I have met the little fella and have gotten over the shock!

Hopefully speak to you all soon.

Big hugs

Great to hear from you!

My son also has a complete bilateral cleft lip & palate. If you want to ask me anything you're very welcome.

Hope it all goes well and lets us know when your little bundle arrives xxx

 

[cazza1982]

Great to hear from you!

My son also has a complete bilateral cleft lip & palate. If you want to ask me anything you're very welcome.

Hope it all goes well and lets us know when your little bundle arrives xxx

Ah Thanks!

It is nice to find a thread specific to what our little bundles of love have so we have a base to ask questions! I am surprised that there isn't more ladies on BNB who are in the same situation.

Hopefully speak to you all soon.

xxxx

 

[vinnypeanut]

Hi im expecting my first little blue bump and was told last week at my 20 week scan that my little man has a unilateral cleft lip on the left hand side...unsure yet wether palate is affected.
Im due to see the cleft team 2moro morning. Im scared but starting to get my head around it.
Just intruiged as to what they say 2moro
x

 

[Angel269]

Hi. I am ttc # 1. I don't really know what to say. My husband was born with a cleft lip and his mum and brother with a cleft lip and palate. It will just be a waiting game for us (once I have conceived and when I get to the opportunity to have a scan). Our GP has said that we will most likely be able to have a 3D scan due to this reason.

I am very anxious and so is hubby-I just wondered if anyone here was expecting a child to be born with a cleft lip and/or palate due to family history or if it was very unexpected?

 

[vinnypeanut]

Angel we dont have any family history of clefts....in our case it was just one of those things.
I hope you get some good news but even if you dont things really arent as bad as they seem.
Admittedly its been hard and will only get harder but it isnt a permanent thing and is so easily fixed these days.
Try to stay optimistic and the best of luck with ttc xxx

 

[becca_amanda]

Hi everyone, my son Daniel was born 19th September 2010 and he has a unilateral cleft lip and palate. I found out on my 20 week scan so it wasn't that much of a shock when he was born. It doesn't upset me at all the only thing that upsets me is thinking of what he'll have to go through in life. It gets a bit frustrating at times when he takes a while to feed (especially at 3am!!!) Haha. His first surgery date is 26th January 2011, that's to repair his lip, nose and hard palate. I was just wondering if your babies use dummies? My nurse told me he cant have one but i tried it and he seemed ok with it it fell out a lot though. Is there a special type of dummy he can have? Thanks girls xx

 

[Celtic Dragon]

Hi everyone, my son Daniel was born 19th September 2010 and he has a unilateral cleft lip and palate. I found out on my 20 week scan so it wasn't that much of a shock when he was born. It doesn't upset me at all the only thing that upsets me is thinking of what he'll have to go through in life. It gets a bit frustrating at times when he takes a while to feed (especially at 3am!!!) Haha. His first surgery date is 26th January 2011, that's to repair his lip, nose and hard palate. I was just wondering if your babies use dummies? My nurse told me he cant have one but i tried it and he seemed ok with it it fell out a lot though. Is there a special type of dummy he can have? Thanks girls xx

My baby was born on 21st November 2010 with a unilateral cleft lip. It's taking a while to get surgery as there's a bit of a waiting list in the South West at the moment. I'm a bit surprised there aren't more Mums with babies with this on here! We only found out when he was born, but probably because it's quite minor. He used to take ages to feed too, but nobody told me to expect that - I only found out when I sought help from a breastfeeding group.

We did use a dummy for a little while (stopped using it now because he couldn't keep it in and would cry more!) - it didn't occur to me that he might not be able to because of his lip...!

Hope all your operations went well - we're still waiting for a date for Rowan's...