Cleft lip and/or palate

[tyesmum]

Hello!:xmas:

We have a little boy aged 3mths who was born with a bilateral cleft lip and palate. We are awaiting (still!) a surgery date for his lip to be repaired in January (4mths). The docs said his palate will then be corrected at around 9mths (June?). Tye is such a beautiful, happy, smiling boy (however, if cranky, will let you know!).
Just wanted to post this incase there are other families out there who have one of these beautiful children or who know others who have?!?!
Their smiles seem so much bigger with their gaps!:)
:tree:

[FourAngelKisses]

Hi, my DD Brooke was born with an incomplete unilateral cleft of the lip only. She will be turning 8 this Christmas.

I missed her wide smile so bad after her surgery, but I also loved her new one.

One word of advice, get LOTS of pics of her before the surgery........I lost all of mine when DS destroyed the rolls of film so I only have a couple.

Best of luck!!

[tyesmum]

Thank you! We have loads of pics both on the computer and on disc incase the computer crashes!
Their smiles are huge aren't they - just gorgeous!
How did your daughter go with the arm splints? Tye constantly has his fists in his mouth and I'm thinking he won't like them very much! We are going to get them a couple of weeks before the op and practice.
With your first son, what does "Bilateral HN" mean? (if you don't mind me asking)

[FourAngelKisses]

You're welcome :)

Brooke never really noticed the splints, but when we got home, we took them off her while she was awake and just used them when she was sleeping. her hands never went near her mouth once.

Bilateral HN means bilateral hydronephrosis....in leymans terms, he had a blockage in his ureters, so urine was building up in his kidneys damaging them and causing them to swell. So he had surgery to remove the blockages when he was 3wks and 7wks old.

I was so relieved when I got 3rd time lucky when it came to having healthy babies, lol.



Not sure if they have told you or not, but keep an eye on Tyes hearing. Brooke was deaf till she was 22mths old but I didn't notice till she got her first ear infection at 6mths. Cleft kids have flatter eustachian tubes so the fluid can't drain.

[matty's mum]

Hi My first baby Michael was born with a Bilateral Cleft lip and Palate I don’t have much time over the next few day to chat but your welcome to have a look at some of his photo’s I don’t have many up of him and am putting them all together now found his photo album (we moved house again) as any questions you like any fears for opps Michaels cleft lip was repaired at 9mths and his palate 13mths. We had a great surgeon is retired now.

I must go feed the baby poor kid

Sorry this is so quick heres the link http://5kennysplace.spaces.live.com/photos/?&_c02_owner=1 and Michaels is under Michaels corner
He doesn’t live at home now so we don’t have him in our Christmas photo’s just incase you wondering where he is.

[FourAngelKisses]

Oh how cute is he!!! He looks like such a happy boy, you've done a great job with him. :)

[mars]

Hi there

Our first child (beautiful baby boy) was born with a bilateral lip and unilateral palate in February 2006.
Gianluca had an operation at 11 weeks to repair right side and hard palate(so no plate anymore) and receive grommits, then another operation at 17 weeks to repair left side. The soft palate was repaired when he was 8 months old.
Gianluca did not mind the splints for the first two operations. The recovery after the third operation was the hardest because he had learnt to crawl three weeks before so he would get frustrated.
Overall though we did take the splints off for pretty much the whole day (just put them on at night) and basically there was always someone with him to stop him from putting his hands in his mouth. I found, for the first two ops, the babygym a wonderful distraction because he loved to put his hands in his mouth so instead he played with the toys hanging above him. For the last operation - we had an activity table (fischerprice???) to keep him distracted as none of the toys/games could be taken from the table and put into the mouth. This gave everyone some relief during the days in recovery.
I wish you and your lovely boy all the very best.