cleft lip

(27 Posts)
elliejjtiny Mon 18-Feb-13 19:58:54

I'm not sure which bit of mumsnet to put this on so apologies if I've put this on the wrong place. I'm pregnant with DS4 and he has been diagnosed with a unilateral cleft lip today at the 20 week scan. I was really impressed with the hospital, we have a scan booked with a consultant next week to confirm the diagnosis (although it's really obvious, even I could see it and I'm rubbish at seeing things on scans). We've also been referred to the people who will do the operation and we see them next week as well. I've been directed to CLAPA as well. Just feeling anxious about the whole thing. I really want to breastfeed and also worried about how he will look and then feeling selfish/vain for thinking like that. I loved going out with my older 3 boys when they were tiny and random strangers telling me they were gorgeous (don't get that now they are older, just a lot of "you've got your hands full!" grin) and I'm worried I won't get that this time. Not sure how bad it is yet, hoping to have a 4d scan to see how severe it is and we won't know about his palate until he's born.

The first thing our cleft nurse specialist said to us was `dont worry its nothing that cant be fixed`

The funny thing is I loved ds on sight but took a while to adjust after the operation which I hear is quite common! I was so proud of him that I wheeled him out, I was nervous but got nothing but positive comments about him, although the older people kept saying hare lip which grated on me. You can express your breast milk as you need to use special bottles that you get from CLAPA which are soft so you can gently squeeze the milk into his mouth (you get use to it very quickly I promise and it becomes second nature).

The lip is repaired at about 6 weeks, and the job they do now is absolutely amazing, its really hard to know ds had a cleft lip, he is 4 now, and the palate at about 8 months, again an amazing operation now. You will wean them a little early before the palate op as they dont encourage a bottle after the op (though we did, tut tut, as ds demanded it!) He will also have regular hearing tests for some years to come, and see the cleft team on a regualar basis.

Hope that helps, but just pm if you need any more information or just want to chat. I make it sound like water of a ducks back but it wasnt and I broke my heart when I found out which I think is natural smile

elliejjtiny Wed 20-Feb-13 17:32:33

Thankyou so much for your really positive story. So far all the medical people have been quite positive and relatives have been quite negative (we've had a lot of oh no, how will you cope? which hasn't been that helpful) so it was nice to hear from someone who has been there and survived! I keep telling myself that the gap in his lip will be smaller and less obvious than DS2's NG tube that he had when he was a baby and the NG tube was fine. How did you and DS find the surgery? I've been told he will have the lip operation done in the hospital an hour away from us and stay in overnight or sometimes 2 nights. Keep telling myself that it won't be that bad. I've done hospital stays before with DS2 and DS3 and a GA with DS2 so I know that the worrying beforehand is the worst bit.

By the way I should have put DC4 instead of DS4. I've been referring to him as "he" since we found out because saying "it" has a cleft lip sounds a lot worse than "he" or "the baby". If "he" turns out to be a girl I'll get an even bigger shock grin

Sosmum Wed 20-Feb-13 19:22:39

Hi Ellie,

I was in your position about 6 months ago.....I found out at my 20 week scan my ds has/had an incomplete cleft lip on his left. My world fell apart for a bit with shock and the how would I cope, how would other people react, our other kids react??? Would I like him even.

All I can say is that he is the most gorgeous boy I have ever seen, his cleft is just so sweet, there is nothing like the beaming wide smile you get from a baby with a cleft.

Now the practical stuff......my boy found it hard to breast fed, he couldn't form a seal tight enough to get enough milk and lost a lot of weight. He took straight away to a normal teat and has been gaining weight ever since.

I have just returned from his op (it was on Monday) we went to Evelina Children's hospital, I was very scared but it was so much easier than I expected. He is doing fab, in fact it's me that is struggling as he doesn't smile in the same way at the moment - his lip is a bit tight from the stitches.

Please pm me if you need other info - I can only say that it's just not that bad although it felt like that when I first found out.

Sosmum Wed 20-Feb-13 19:25:15

Oh and we were told 50/50 chance of a cleft palate too, we were lucky and ds has a normal palate but he does have a gap in his gums!

HumpheadWrasse Wed 20-Feb-13 19:43:24

Hi Ellie, I have a very similar story to those above. DS was born with cleft lip and palate, lip was seen on the 20 week scan. The support we had and continue to have from the cleft team at the hospital where he had his ops is absolutely wonderful. He had his lip done at 3 months and his palate at eight months, he came round really quickly from the ops and has a minimal scar. He couldn't breastfeed but had expressed milk in a special squeeze bottle ordered from clapa. I found expressing quite tiring/stressful, kept it up for six months, if I could do it over I might have introduced some formula after first few weeks.
Never had a negative reaction, I remember being really nervous when a group of teenage girls peered into the pram when he was a few weeks old, they told me how beautiful he was and asked if theycould hold him.
DS needs grommets in his ears which they think is related to the cleft, and has some speech therapy for minor speech difficulties but is a very healthy and happy little boy with lots of friends.
PM me if there's anything you want to ask.

Hi Ellie, Ooo Sos, we went to the Evelina aswell, 4 years ago, we are under South Thames, absolutely brilliant.

I think it takes relatives and friends longer than us to adjust, but we get the information first hand and because the medical staff and CLAPA are so postive,then that makes us aswell grin and so we should as the surgery is so advanced now.

The operations were fine apart from very difficult and upsetting to leave your baby in someone elses hands, I found it was just something to get through really, counting down the days etc..

Tbh its actually the first two years I found exhausting, we were at the hospital so frequently, hearing tests, check ups, speech, othodontist and so on and on and on..... but I hear they may be changing it slightly as the operations are working so well that they dont need as much support as they originally thought. (from what our surgeon told us, and he was a pioneer in the new surgery that all children have now, the procedure has changed so that it becomes as good as scarless and the palate is as good as it could ever be, so the days of obvious scars that you see in adults who had clefts are over) I think the new surgery was developed as little as about 10 years ago, so I consider us very lucky now! <and breathe sorry for long garble>

I dont know if you have all the other checks hearing etc if you just have a cleft lip.

Most people dont realise that ds was born with a cleft until I tell them, then you see them trying to find the scar!

Lostonthemoors Wed 20-Feb-13 20:03:13

No personal experience, but I know la leche league has good info on bf babies who have cleft palates:

www.llli.org/docs/348.pdf

https://www.llli.org/nb/nbjulaug04p137.html

www.llli.org/nb/nbmayjun02p88.html

manitz Wed 20-Feb-13 20:48:51

hi my cousin is 30 ish and had a hair lip and cleft palate when he was born. he looks great. My aunt found it difficult (no scans) and the op was traumatic but more for her than him I think. I don't remember thinking he looked odd at any point. My ds was in intensive care for 8 days when he was born, he didn't have a cleft but I found that, even though I haven't been able to express ever before with the others, because I had to I got 8 oz per express by day 4 - he had a nose tube. If you have to do it I think it's a possible way of getting breast milk in.

I`m afraid that La Leche advice is well out of date and is American which had a different procedure than in the UK, afaik they use some sort of plastic plate to bridge the hole there whilst they await operating which can help with bf, here it is impossible to bf a baby with a cleft palate as they cannot make a suction, if the baby sucks on the breast they become exhausted as they are sucking with all their might and getting nothing, so it is actually somewhat cruel.

You can express if you wish, lots of mums with clefts do.

manitz Thu 21-Feb-13 14:56:11

hi I would get prepared for possible expressing before you get there. my midwife assistant was a fantastic help and was there more often and before the breastfeeding adviser (who I'm sure would have been as helpful but I didn't get to see her). I was really stressed as ds wasn't breathing on his own and I was desperate to feed him. Expressed with no luck for 24 hours and was in tears for the entire time. She gave me a syringe to hand express into and i massaged for ten minutes then expressed for ten mins only with a 3 hour break in between expressing (when I read the paper and did the crossword). By the time my milk came in I was up to 6-8oz on a machine. Using a syringe first did wonders for my confidence and I gradually upped it to a bigger one and then a cup and then a bottle as I produced more.

A bf expert or someone who knows more about clefts may be able to advise you about bf with a cleft but i would get thinking about a pump if I were you. In our case ds only had formula for that first day and then I was able to feed him (via a tube) from then on and it gave me back some control in a situation which was not ideal. ds picked up bf once he was able to breathe on his own so if the cleft op lets them feed later on you could work towards that later.

elliejjtiny Thu 21-Feb-13 17:18:40

Thanks everyone. I got a load of info from the cleft team in the post today. He/she will have the op(s) at Frenchay hospital in Bristol and they have a section of the ward for babies having cleft ops so hopefully we will be with other babies in the same situation.

I did expressing for DS2 as he had low muscle tone and a weak suck. I found it incredibly hard and I felt like I was always feeding/pumping. Hopefully it will be easier this time as I know what works and what doesn't. The cleft nurse said I can borrow an electric pump from them too which will help I think. I've also got a suplemental nursing system where you pour EBM/formula into the baby's mouth while you breastfeeding which is good for babies who can't suck properly and also mums with low supply as the baby is stimulating the breast to produce milk but not getting frustrated because not much is coming out.

The cleft smile sounds lovely. DS2 used to smile with his mouth wide open when he was a baby.

I found out from CLAPA that we can get a free 4d scan to try and see how severe the cleft is so I have booked that for when I'm 28 weeks. I'm also going to try and convince DH that with all the appointments in bristol we need a bigger car that fits 4 car seats in. We've been struggling along with the 4 seater car that we've had since before we had DS3. It's the first car we've had from "birth" thanks to the scrappage scheme so DH is reluctant to trade it in! It's far too small for our needs now though even if it is cheap to run.

We're supposed to be going on holiday with the inlaws 6 weeks after the baby's due date (booked before I got pregnant) in a self catering cottage in Wales. Is it still feasible to go? On one had it means 5 other adults apart from me to help with the older 3. On the other hand will I be permanently attatched to a breast pump? Maybe I should just see how it's going nearer the time. I've had 3 quick deliveries with not even a stitch before so not really worried if I'll be ok but if we are still really struggling with feeding I think I'd rather have DH take the older 3 and leave me and the baby with a pump, tv box set and stack of takeaway menus. They do the lip op at 3-4 months here so it wouldn't interfere with that. DH keeps telling me not to worry and it will be fine but he'd say that if my head was hanging off!

Sorry for the essay

Theas18 Thu 21-Feb-13 17:25:05

Sending you a hug. any potentially challenging condition in your precious baby is a real upset.

However , as you've heard from the ladies/babies that have been through it, all will be well in the end.

Lostonthemoors Thu 21-Feb-13 21:32:35

You can do antenatal expression of colostrum and freeze it for your baby - then they can have that by oral syringe for the first few feeds if bf won't work.

Sosmum Sat 23-Mar-13 19:33:35

Hi Ellie,

Just wondering how you are now?? Did you have a further scan?

elliejjtiny Sun 14-Apr-13 02:08:22

I had a 4d scan this week and baby looks lovely. Cleft is currently measuring 9mm at 28 weeks. When I put the photos up on facebook a couple of people said he/she looked beautiful which meant a lot. FIL said it was a good job we know in advance as it would have been a shock to give birth to an ugly baby without knowing beforehand shock. Baby is already sucking his/her thumb so hoping that's a good sign that feeding will be ok.

Having some trouble with the HV though. She's already done one antenatal appointment and now she wants to do another 2! She doesn't seem to know anything about cleft lips either which makes me think I'd rather just stick with the people who know what they are doing and just go to the clinic when I want the baby weighed. I'm quite happy to go to appointments but I can't see how several visits from the HV telling me how terrible a cleft lip is will help.

organiccarrotcake Sat 04-May-13 21:08:30

Crikey no! You can certainly decline the HV visits though.

Sosmum Wed 08-May-13 19:51:58

I had the same from both the HV and my midwife. We had all of DS check's done by our cleft team and every now and then he gets weighed.

Your FIL comments are normal - I had loads like that - in a fact a good friend asked if I ever take him out till he'd 'been fixed'

Let me know how you're getting on and if you have any questions please ask.....I'd love to help x

elliejjtiny Tue 21-May-13 17:14:55

Scan number 6 today smile. Had Consultant, junior dr and student dr in the room so had to park buggy in the waiting room and DS3 sat on the student dr's lap. Baby is now head down (has been breech so far), huge (eek), extra water and they thought they could see a cleft palate today.

HV came a couple of weeks ago and she has agreed to be a bit more hands off thank goodness. I asked her what her experiences of cleft lips were and she said she'd seen quite a few but 15-20 years ago and everything has changed since then. I had to tell her when the operation would be as she didn't know shock.

Has anyone had a paediatrician present at the birth? Midwife says I need one "just in case".

33+4

Sosmum Thu 30-May-13 21:14:36

Hi Ellie,

Yes, lots of people at ds's birth! I lost count and now can't remember.....awful I know. It was a planned c-section though.

I was told by my cleft nurse it's 50/50 to see a cleft palate so I'll have my fingers crossed for you all......but either way you'll cope.

btw - I too had LOADS of water.

My ds is now 7 months old, like a proper baby now, rolling over, plays with his feet, is eating so well it shocks me. He is the light of my life, I feel much more protective of him because of his cleft.

Hope you're doing well xxxx

elliejjtiny Fri 07-Jun-13 01:46:51

Just letting you all know that DS4 arrived on Monday by C-section at 35+3. He's in special care and his palate has been described as severe and extensive.

Your DS sounds lovely Sosmum. Really nice to hear about how things could be several months on.

mrsbigz Sat 08-Jun-13 10:03:06

Hey Ellie, been reading your posts and while I have no experience of cleft lips I did just want to pop on and say congratulations on the birth of your son!! I know scbu can be a bit overwhelming (my 2nd and 3rd sons were both born at 31wks) but the staff are wonderful so hope you are getting lots of support! Lots of love to you and your family x

manitz Sat 08-Jun-13 20:23:15

hello ellie, congratulations. As I said earlier my ds was in for a bit after being born at 35 weeks. Once I got in the rhythm I found it easier but logistics were difficult with the other kids. When will they operate?

elliejjtiny Sun 09-Jun-13 22:59:00

Thanks for the congratulations. First op will be at 3-4 months corrected so end of October roughly. Already had a couple of negative comments but also some lovely ones and loads from random strangers who say ooh, my friend's sister/cousin/next door neighbour had a cleft lip and you'd never know now. I know it's a cliché but I don't really notice it, I think his hair is the first thing you notice when you see him, he's got loads and it sticks up in natural spikes grin.

5madthings Sun 09-Jun-13 23:05:54

Oh congratulations smile

I have no personal experience but ,y friend has a two yr old who was born with a cleft lip and palate, it has been repaired, lip first and then the palate in a few operations. He still has feeding issues but he is a delight a lovely little boy and the surgery results are amazing!

I hope everything goes well and you are home soon xxx

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