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Original poster

Cleft lip and palate

19 replies

Dookswife · 14/08/2013 07:07

Hi, wasn't sure how to add to a thread so thought I would just start one. I'm 23 weeks pregnant with my first and we found out at our 20 week scan out baby has a cleft lip and probably palate on the lefthand side . It was really scary to find out particularly as I tend to faint in hospitals! My husband is great about it, really pragmatic about it because I guess in the grand scheme of things it's not that bad just different. I guess I also seeing it from a different point of view as I am a Speech Language therapist as well as a mum to be. So while I've seen a few repairs and worked on speech with some it's going to be very different because I will be on the otherside. I'm trying really hard to work through it but I guess it's frustrating knowing but also knowing I can't do anything for another few months. Does anyone else feel like this or have any ideas on coping?

OP posts:

Ledkr · 14/08/2013 07:19

Oh sweetie. My battery is about to go so ill post later but my dd was born with a cleft palate 2 yes ago.
It was not picked up at the scan.
I was devastated but didn't need to be at all as she's fine and surgery was successful and not too traumatic.
I got loads of support on here.
You could try searching my threads.
In the meantime can you go on the clappa website? It's very very good and there are people to talk to.
I am around to help you too if you need it.
Back later after a charge.

Ledkr · 14/08/2013 07:20

Yes I can imagine as a SALT you would feel scared.
I was a nurse and felt as if it was the end if the world.
It's not though.

ajandjjmum · 14/08/2013 07:26

I was in your shoes 22 years ago - except that you clearly have more knowledge than I did at the time.

I have pm'd you.

ajandjjmum · 14/08/2013 07:34

Aargh - except I can't.

Was just going to have a little brag about DS. He is an amazing young man. The many appointments - and in his case, operations - have been a pain, but have not controlled his life.

He is popular, good looking and bright. He's just finished his Physics degree and is moving on to do a Masters at one of the UK's top unis. He is one of the 'good guys' who people tend to love.

I will always remember when we were told about his cleft - picked up on a scan when I was 32 weeks pregnant - very unusual all those years ago! It ruined Christmas! But gave us the chance to get our heads around the situation, and get plans in place before DS was born. For instance, Cleft care was all over the place at that time, and the surgeon who we would have been automatically been referred to was not a specialist cleft surgeon. My very practical DH sorted this out, pre birth, which was fantastic. Things have changed enormously in cleft care, and your little one will have a cohesive team.

There are people with up to date experiences who will be able to give you better advice than me, but honestly, despite all my worries pre-birth and in those early months, I wouldn't swap my DS for anything. Although his cleft doesn't define him, the experiences he has had have no doubt contributed to making him the very special person he is today.

Good luck!

Original poster

Dookswife · 14/08/2013 08:01

Thanks everyone. I do know it will be ok but it's hard I guess. How did you tell people? Some friends know and family know but not sure how to tell other friends. Is anyone in NZ who have gone through the system here? I've got so many questions!

OP posts:

ajandjjmum · 14/08/2013 08:16

We told a few very close family and friends before the birth - although not for a few weeks after we knew, so that we had time to get our own heads around it.

I was glad we did this - it was upsetting for everyone - but DH's DF was particularly upset, because he had a brother with a cleft, and felt responsible!!!

We then decided that other people (majority of friends and distant relations etc.) DH would tell when DS was born, along the lines of 'we have a little boy, he was born just after 10 and weighs a ton, and by the way, he has a cleft lip and palate, but fortunately that can be sorted'.

We've tried to be positive throughout - not always easy, I know.

Ledkr · 14/08/2013 09:01

We told everyone but before it could sink on we realised she was more seriously ill (pneumonia) so it was overshadowed and put firmly into perspective.
Ask questions if you like?

Did you look on clappa site?

Original poster

Dookswife · 14/08/2013 09:54

Thanks ajandjjmum that's what I was thinking in terms of telling people. DH has 3 brothers so they are pretty matter of fact about things which is great! And my mum is a nurse so she is great. I was wondering about the options for bottles? What did people find worked best for them? I'm assuming I won't be able to breast feed which is disappointing but does mean DH can be in on the bonding time feeding allows ASAP!

OP posts:

VelvetStrider · 14/08/2013 10:00

I have a cleft lip, and I also have a friend whose baby has a cleft lip and palate, so I know a little bit about it if you want to ask questions.

One of your first issues will be feeding. If it turns out the cleft is only affecting the lip then you may be able to breastfeed (I was bf for 9 months, pre and post op) but if your baby has a cleft palate too then suction may be impossible so you can either express - CLAPA hire out pumps in the UK, don't know about NZ - or use formula. They also provide special soft bottles so you can squeeze milk into the baby's mouth.

I would suggest you don't shy away from taking photos of your newborn. I find it fascinating to look at my baby photos. Don't stay away from baby groups and friends either - people aren't going to recoil in horror at your baby's cleft, they are more likely to be interested and ask questions, which is all good for raising awareness of clefts.

And you can see from ajandjjmum's post, a cleft has no effect on intelligence, attractiveness or popularity! I've got a degree, tons of friends and I'm stunningly good looking too!!!!

Ledkr · 14/08/2013 16:32

My dd has bottles from the clappa website.
Orthodontic teats and bottles you can squeeze to help them feed. The bottles look pretty normal tbh.
I couldn't feed anyway as have had a mastectomy but I think you could express and use the bottles if you wanted.
Dd is two now, beautiful and her speech is coming on well.
She's a bit nasally but is doing well.
I even found weaning quite easy and she ate most things with no problem.
Had surgery at 9 months and has continued to do well.

ajandjjmum · 14/08/2013 18:51

I'm sure there's room for a survey result here - based on Velvet and my DS (and I'm sure Ledkr's DD), there is now sufficient proof that people who happen to have clefts are the most intelligent, attractive and popular people on the planet! DS would think so - he's forever telling me how amazing he is, and how lucky I am to have him. I agree.

I'm very jealous of your friend Velvet. I have a relation with a cleft, and from the minute we told her family (one of the few we told pre-birth), she has never mentioned it, or offered to speak to us or DS. Her parents on the other hand, came round as soon as they heard - and made me jolly glad DS was born relatively recently, rather than 50 years ago. It must have been lovely for your friend to have someone to talk to.

boysrock · 14/08/2013 19:10

Ds had a cleft lip that wasnt picked up on scan. It was scary at first especially handing him over to be operated on at 3 months. But there is a lot if support to be had to get through it.

It depends on the severity of the cleft as to whether people notice. I told close family and friends but strangers who admired him never commented on his lip pre op. which was a relief to me.

Now hes 4 and definitely the brightest and most articulate out of 3 dc. doesntever stoptalking

Ledkr · 14/08/2013 19:11

When I take dd for her appointments I always see extremely handsome and attractive young men and women who have had repairs.
A lady I was next to when dd had her op cried when she saw her dds repair as she'd got so used to seeing her with the cleft😁

VelvetStrider · 14/08/2013 20:00

Thanks ajandjjmum. It really is amazing what the cosmetic surgeons can do with clefts these days. Even my repair (mid 1970s) is often not noticed by people I've known for years! It must have been very different hundreds of years ago (and in some third world countries today) when not much could be done about it and lots of superstitions surrounded the condition. My mum still calls it a 'hare lip' so things have changed just in the last couple of decades.

Ledkr my friend felt similar - knew the repair was necessary for baby's sake but had grown to love the beautiful gummy cleft smile!

Smile Train is another cleft charity, although I think they deal more with fundraising for ops in the 3rd world, but they might have some useful information.

bigreddrum · 14/08/2013 20:14

My husband was born with a cleft palate 43 years ago. He is also stunningly attractive and hugely successful , evidence of his success is that he managed to attract me. He had another repair about 3 years ago but other than that his life is completely unaffected by it (in fact I think he secretly likes being in the cleft club). #attentionseeker

Ledkr · 14/08/2013 20:26

I also look at my dd and think what what an amazing brave and unique little girl she is. I am so proud if her.

Original poster

Dookswife · 14/08/2013 21:48

Thanks for all your lovely feedback and support will be looking at bottles and things in the next few days. I think today I'm ready to be more pragmatic about things like my DH who said last night if its a boy he will just be starting his injury list earlier than planned! Will be able to let you all know about the system here in NZ soon. Thanks again x

OP posts:

Original poster

Dookswife · 09/01/2014 07:12

Hi,
My DS is now 4.3 weeks old, born at full term. He has a unilateral cleft lip and palate- the celft is quite wide and it is almost bilateral on the palate. He wears an othrodontic plate which we tape on and a lip tape to help with movement and bring everything into line.

He has a Haeberman bottle and NG tube feeds because he is a very hungry wee thing but runs out of steam drinking from the bottle. Generally drinks between 15-60mls through the bottle and has the rest through the NG tube (up to 150mls) Has anyone else had experience trying to wean off NG tube feeds? I really want him to be drinking more and more through the bottle.
Any handy hints would be most appreciated.

OP posts:

RaspberryRuffle · 09/01/2014 17:58

Congratulations Dookswife on the birth of your son. Can't be any help regarding feeding advice I'm afraid but wanted to wish you luck. Maybe the medical staff where you are can advise, or one of the parents here.

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