Anyones baby/child have cleft lip/palate?

[jen1604]

Hey

I've been thinking about making my way over to this section for a few days now but was building up the courage.

So,I'm Jen,I'm pregnant with a little boy who at his 20 week scan was identified with a cleft lip and at our consultant scan we were given a very very high chance that it will be palate too. We have had an amniocentesis and had our results back to say there are no chromosonal abnormalities present,just the cleft.

So our next step will be being referred to CLAPA and the cleft team and to meet our cleft nurse. He will be having his operations at Frenchay in Bristol (apparently thats where they deal with all of the cleft operations in the South West) which is about 2/2 and a half hours from us.

Is there anyone else on here whose little one has a cleft? Palate or just lip? What difficulties have you faced? How long were you in hospital for after birth? I was hoping for a homebirth but have been told he will need to be delivered in hospital as there is a higher chance he will need to go into the special care baby unit.

Thanks in advance for any replies

 

[tinks80]

I have been thru this but didn't want to r&r & would like to send my thoughts with you xx

 

[storm11]

hi hun, i have 3 kids all were born with cleft lips and pallets, bilateral cleft lip and pallet, a incomplet unilateral cleft lip and soft pallet and an incompleete bilateral cleft lip and pallet, so i understand a fair bit, my eldest the b/cl + p had to be cup feed but wasnt getting enough so they put a tube in and feed her that way i was in hospital a week with her as she was born over the easter holidays, my son i/ucl + p obv by now i had the experiance of having feed my eldest with the squeezy bottles so i was allowed home after 2 days they wanted to b sure he was feeding ok, by the time my third child was born i was a dab hand at it lol. i carry the gene for cleft lip althou i refused the amnio with all of mine, i am 2 weeks away from having my fourth baby and this LO dont have a cleft lip or pallet so feeding with a normal bottle is whats worrying me im here if you ever need a chat hun, xxxx

 

[jen1604]

hi hun, i have 3 kids all were born with cleft lips and pallets, bilateral cleft lip and pallet, a incomplet unilateral cleft lip and soft pallet and an incompleete bilateral cleft lip and pallet, so i understand a fair bit, my eldest the b/cl + p had to be cup feed but wasnt getting enough so they put a tube in and feed her that way i was in hospital a week with her as she was born over the easter holidays, my son i/ucl + p obv by now i had the experiance of having feed my eldest with the squeezy bottles so i was allowed home after 2 days they wanted to b sure he was feeding ok, by the time my third child was born i was a dab hand at it lol. i carry the gene for cleft lip althou i refused the amnio with all of mine, i am 2 weeks away from having my fourth baby and this LO dont have a cleft lip or pallet so feeding with a normal bottle is whats worrying me im here if you ever need a chat hun, xxxx

Thank you for replying You get so much respect from me for doing this 3 times,once is scary enough for me!

 

[helloeveryone]

hi honey, my son was born with a cleft lip, and just last week we had his lip repair done he is 6 months now...They done a lovely job and within 5 hours he was feeding again. haven't got time to chat now as i need to get some sleep just wanted to stop by and say hi .xxx i will give you a PM when i get a chance..

 

[Leinzlove]

Hi, my daughter was born with a cleft palate. As part of Pierre Robin Sequence. Her palate is getting repaired March 7. She stayed in the NICU for 5 days after birth. We just had to learn how to feed her with a different bottle.

We had craniofacial follow up in June. She was listed as failure to thrive and had recessive breathing. We had to have jaw distraction surgery or a trach. We opted for distraction surgery. She stayed in the PICU for 7 days. (This had nothing to do with her palate.)

In September we got her distractors removed. And she had to get tubes in her ears. She had fluid trapped in her right middle ear. It was causing her not to hear normally, not hearing loss.

It's a journey, but... after the first year, it gets a lot easier. Chloe also has nothing different with her chromosomes. Genetics say we have an increased risk of 3-5% on having another child with a cleft.

 

[jen1604]

hi honey, my son was born with a cleft lip, and just last week we had his lip repair done he is 6 months now...They done a lovely job and within 5 hours he was feeding again. haven't got time to chat now as i need to get some sleep just wanted to stop by and say hi .xxx i will give you a PM when i get a chance..

Thank you for your reply

I'm so pleased your sons operation went well, how long was he in hospital for in total? Please do pm if you get a chance, it would be lovely to talk

 

[jen1604]

Thank you for stopping in Leinz

I keep hearing 'it's a journey' from the doctors/ nurses and I guess they (and you) are right! I'm hoping arming myself with information will make the journey a little bit easier. A lot of people seem to have spent about 5 days in hospital after birth, at the moment thats one of my biggest worries, being away from my other 2 children for 5 days apart from visiting hours... But I guess we will wait and see.

I really really hope your beautiful girls palate repair goes well

 

[sophxx]

i havnt got any experince of it but a lady has posted her sons journey with pictures in the photo graph bit on here not sure if youve seen it x

 

[TigerLady]

https://www.babyandbump.com/photo-g...-lip-surgery-updated-december-2nd-2011-a.html

 

[raquel1980]

Hi there, my little girl was born with a cleft palate - she's now 15 months, had the repair at 11 months which was a huge success and now you wouldn't know anything had ever been different about her. She did spend a long time in hospital but she was premature and had breathing problems. There is a fantastic CLAPA group on Facebook, so much support on there if you're on facebook. They were fantastic when we were getting near to operation dates.

 

[katealim]

My daughter who is 6 now born with a cleft palate,(complete hard palate, partial soft and bi-fed uvula). She had her surgery at 8 months and has never had to have any repeat surgeries. The cleft palate teams are amazing. We now go for follow up once a year just to check in. She had alot of issues with ear infections and sinus infections when she was younger so she had to have her adnoids partially removed and has had lots of ear tubes. Now at 6 it's been years since she had any tubes or issues at all; and her speech is pretty good has trouble with certain sounds but everyone understands her.

 

[Leinzlove]

DD had her palate repair on March 7, 2012. She was 10 months old. It was alot easier than I expected. She was sent home 24 hours later and is doing great! She was on no restrictions except for liquid diet. She was bottle broke at 9 months, so we had no issues. She was then allowed baby food a week later. And on Wednesday all things resume as normal.

Hope all is well with you! And you are learning more every day!

 

[TaNasha]

My baby girl was also born with a cleft lip and palate and she just had her 1st surgery 2 months ago.
Let me know if you want to chat or if you need any advice regarding feeding ect. I also have loads of photos if you are interested ( and Ilike to show my gorgeous happy girl off to everyone )

 

[katealim]

The only thing no one has mentioned yet is the horrible arm braces after surgery! Wish someone would have warned me about that. My dd had her arms boarded for a few weeks post surgery to stop her from putting anything in her mouth while she healed. She hated those boards and complained more from that then from any pain after surgery. Looking back now though I can honestly say that 6 years post surgery the whole thing has really been a drop in the bucket. Difficult in the first year or so but now she's just fine and I tend to forget how stressfull the whole ordeal really was. It deff. gets better and isn't all that bad in the end! Chin up all will be just fine.

 

[TaNasha]

We never got the arm braces, our surgeon said kids start to panic more once they are restricted like that. We just had to keep a good eye on her for 2 weeks with her trying to put stuff in her mouth. She was allowed a dummy and that helped so much!

 

[Leinzlove]

We never got arm braces either! She was also allowed to continue sucking on her thumb. As the surgeon said she couldn't put it back far enough to damage the palate repair.

Her restrictions were no pacifier, no bottles. She was on liquid diet for one week, then baby food for two more weeks, then back to normal eating.

 

[Leinzlove]

How did everything go? Hopefully to perfection! Would also love to see a picture!

 

[Leinzlove]

Oh wait, I just noticed... your baby in your profile picture! He is soooo cute!!! Please update this thread!

 

[1momsheart]

Hey

I've been thinking about making my way over to this section for a few days now but was building up the courage.

So,I'm Jen,I'm pregnant with a little boy who at his 20 week scan was identified with a cleft lip and at our consultant scan we were given a very very high chance that it will be palate too. We have had an amniocentesis and had our results back to say there are no chromosonal abnormalities present,just the cleft.

So our next step will be being referred to CLAPA and the cleft team and to meet our cleft nurse. He will be having his operations at Frenchay in Bristol (apparently thats where they deal with all of the cleft operations in the South West) which is about 2/2 and a half hours from us.

Is there anyone else on here whose little one has a cleft? Palate or just lip? What difficulties have you faced? How long were you in hospital for after birth? I was hoping for a homebirth but have been told he will need to be delivered in hospital as there is a higher chance he will need to go into the special care baby unit.

Thanks in advance for any replies

hi, my Danielle was born with a bilateral cleft lip/palate I found out when I was 20 wks pregnant at my anatomy ultrasound. she is now 20 months old born 11/20/11 when she was born she ate from a pigeon nipple they are wonderful, its touch sensitive so it allows your baby to drink like a normal nipple. my baby wasn't eating much until we tried the pigeon nipple then she started eating more then most babies. I had a csection so she stayed n the room with me and she went home when I did no nicu or anything. they suspected goldenhar syndrome because its common with a cleftlip an palate. we just was able to get her genetics test done today so were crossing are fingers... As a mother I was scared to have a child with cleft lip I hadn't even heard of it until I became pregnant with her, i looked into it and did everything i could to prepare myself, then Danielle was born and it wasn't nothing like i expected, i looked at her for the 1st time and all i remember is how beautiful she is. like i said she is now 20 months old and you can barely see the scar where she had her nose and lip repaired, the doctors do beautiful work. my Danielle is above average on her speaking, and she hit all her milestones early.she is just another bouncy happy toddler. when they repaired her nose and lip she was only in the hospital for 1 night and the same with her palate repair. so try not to worry so much your baby was sent to you for a reason..........
if you would like to see a pic let me knw.
my heart goes out to you, i have been where you are, feel free to ask me anything you may want to know, or just to chat. stay strong