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Pregnancy

cleft lip

17 replies

MrsCharlieD · 20/02/2014 12:19

Hello everyone

Im currently 24+5 weeks with my first dc and this week we found out our baby has a cleft lip. This has absolutely floored me and i am heartbroken. We have been referred to queens medical centre in nottingham and have a scan tomorrow with a specialist sonographer. Im wondering if anyone else has any experience of this and what i can expect tomorrow and what life was like for your lo. I've been through a range of emotions and have such a fear of how it will be seeing him for the first time. Thank you for reading x

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badfurday · 21/02/2014 09:18

Just wanted to bump this for you.
Sorry I cant offer any advice, but im sure someone will.

healthyhippo · 21/02/2014 09:52

I'm a dentist and just wanted to reassure you that you will be really well looked after by the cleft team, who will support you and your son over the coming years.

They repair clefts much earlier than they used to and have better methods of helping with feeding etc in the initial weeks before the first op. You will have lots of appointments with different services over the years to come but everyone is really nice (at least they are up this way and I'm sure its the same down there). Cleft babies are really, really well cared for. The team may be able to put you in touch with a local group to chat to.

You will very quickly love your baby, and get used to his appearance (it will just seem 'normal' after an hour or so) and probably won't even think about the cleft once you have feeding routine established.
He will be gorgeous dont worry. x

weebigmamma · 21/02/2014 11:28

Good friend of mine had a baby with a cleft lip. He is now 5yrs old and you'd have to look really hard to notice that he had ever had it. It was a hard time for her because the baby needed operations- no parent ever wants her child to go through that- but he was completely fine and the whole family were treated really well throughout everything. He is and always has been a gorgeous little boy. Nobody wants to hear that their baby will need treatment- ask in your hospital if there is any support available for you and your partner as you face this. xxx

weebigmamma · 21/02/2014 11:29

The scans you get are meant to be amazing by the way. Hopefully you'll be able to see your little one really clearly :-)

sonlypuppyfat · 21/02/2014 11:38

My niece has a little boy with a cleft lip its impossible to see any mark on his face.

steppemum · 21/02/2014 11:45

a friend of mine has a child who had a cleft. I met her when her daughter was about 18 months and I had no idea, you couldn't see and she hadn't even had her final op at that stage.
It is always a shock when you hear something may be wrong, give yourself time to get over the shock, and then the practicalities take over.

Fishlegs · 21/02/2014 14:14

My ds1 was diagnosed antenatally with a cleft lip and palate. I was devastated, and spent some time grieving for the 'perfect' baby that I had imagined and wasn't now going to have.

We met the cleft team, in particular the specialist nurse, who was amazing and so supportive. We were given a lot of information over this time about potential problems (and solutions!) with feeding, and vague information about operations (I wasn't ready to take any details in at that time and the nurse was v respectful of that).

Then he was born, and had the most beautiful big eyes, and he was utterly perfect, cleft and all. As we had been so well prepared by the cleft team we hit the ground running, and although some of it was difficult, especially the time around ds1's ops, we just got on with it, the same as any other new parents.

Now he's almost 8, still with beautiful eyes, and very confident. His peers don't seem to notice his small scar, we don't really as it's just a part of him and we love him to bits. He will still need another 1 or 2 ops (due to the palate not the lip) when he's a bit older, but tbh he's always taken everything in his stride. We are so proud of him.

This stage where you are now was so hard for me, I really feel for you. I hope you feel better once the cleft team have been in touch. Please pm me if you'd like to chat. Also, CLAPA have local parent contacts and groups if you would like to talk to anyone who has been through the same experience. There's loads of info on their website too, I'm not sure the hours I spent looking at the 'before' and 'after' photos on there really helped me though, it wasn't until I met my baby that I knew everything would be fine.

MrsCharlieD · 22/02/2014 17:43

Thank you everyone for the responses. we had the scan yesterday and were told it appears to be both sides of his lip. They couldn't see the pallet but likelihood is it will be affected. We are set to have a home visit from our cleft nurse next week and hopefully this will be the start of understanding what is going to happen and what we can expect. I am feeling a lot more positive and the sonographer said yesterday that his heart and organs are all as they should be and his growth is spot on so it appears this is a random occurrence and not due to chromosomal issues x

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MrsCharlieD · 22/02/2014 17:46

Fishlegs thank you for your post. It is so reassuring to hear positive stories from someone who has been through this. It is lovely to hear your ds is healthy and happy x x

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Fishlegs · 22/02/2014 18:55

That everything else is ok is great news.

Hope you are managing to relax this weekend, and good luck with the cleft nurse next week.

VelvetStrider · 22/02/2014 19:20

Hi MrsCharlieD, I have a cleft lip. It was repaired in the 1970s when surgery was nowhere near as good as it is now, but nevertheless many people who have known me for years haven't noticed!

There is loads of information on //www.clapa.com - The Cleft Lip and Palate Association.

The lip will be repaired at 2-3 months old so your DS won't remember it at all. Palate repairs if needed are done at closer to a year, and sometimes a bone graft might be needed (for the gum I think, although I'm no expert as only needed lip surgery) which is done at around 8 years iirc.

You may need extra help and advice if you plan to breastfeed. My mum managed to BF me for 9 months but it may be different with a bilateral cleft, I'm not sure.

If he has a cleft palate too then he won't be able to get the suction needed for feeding, but Clapa have hospital grade breastpumps to borrow if you want to express. In any case, you would need special squeezy bottles as he wouldn't be able to suck from a normal bottle so would need a little more help.

Good luck, I'm sure your DS will be absolutely beautiful . Take lots of photos - I'm fascinated by my 'before op' pics, I'm sure your DS will be too!

Feel free to PM me too

grobagsforever · 22/02/2014 19:54

My cousin's baby was born with cleft lip and palate. With support she was able to exclusively breast feed him and he had the necessary ops and now you cannot tell at all - he's 18.

topmammy · 22/02/2014 20:58

My husband was born with a cleft lip and palate. The NHS did care for him very well and did a great repair job, and this was nearly 30 years ago. He had quite a few operations and had his last one shortly after I met him in his early 20s. My DH said the NHS surgeons were always great, real perfectionists and want to do the best they possibly can for you. I've heard repair techniques are even better now and require less operations so I'm sure your baby is going to be in very good hands. I'm 14 weeks pregnant at the moment and me and DH are quite anxious to find out if baby will also have a cleft. From what I've read though it's not genetically inherited, it just seems to be a random occurrence. Very best of luck to you and your bundle of joy when he arrives :)

MrsCharlieD · 22/02/2014 21:13

I am very grateful to everyone who has taken the time to respond to my thread. I think there has been a sort of grieving period where i grieved for the baby i wont have but for some reason in my head id lost sight of the fact that we are still having a baby. He will still need everything we have bought and in every other respect he will be a normal baby. I have relaxed this weekend and tomorrow i am off to john Lewis to kit out the nursery x

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elliejjtiny · 23/02/2014 00:14

my 4th little boy was born with a cleft lip and palate, he's 8 months old now and has had his lip repaired and I'm nervously waiting for a letter giving us the date for his palate operation. I found the stage you are at now the worst bit as I was worrying about the unknown. DS4 is gorgeous and I'm sure your baby will be too.

Sarahg33 · 26/02/2014 14:42

Hi. I also just found out there's a high chance our baby has
a cleft palate. It was picked up at the 20 week scan yesterday and we see a specialist next week. My body has gone into shock mode and I keep having anxiety attacks and blaming myself. It is like a grieving process, trying to come to terms with knowing your baby will have a defect. I'm trying to be strong for him and it does seem like the surgery they can do now is amazing. It sounds like we are going through similar things so feel free to contact me. My parents live in Nottingham so I'm up there sometimes.

MrsCharlieD · 26/02/2014 18:37

Hi Sarah thank you i will get in touch x

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