Cleft babies

[mshobbit]

Hi there

Just wondering if there are any parents of cleft babies on this forum. My son (Kaleb Asher, now 6 months) was born with a severe unilateral cleft lip and palate. Would like to hear about how others have coped. Am also happy to be contacted if you or someone you know is expecting a cleft baby. I had to find all the info and support myself and even then it was difficult to find.

Cheers
Jacquie

[pippa]

Hi mshobbit,

isn't there a cleftpal group or contact in your state, I live and work as a neonatal nurse in Western Australia and all of our cleft babies get referred to a member of the cleft pal organisation for when they go home, so they have someone they can contact to ask questions. (they are usually other mum's who have had a baby with a cleft)

Pippa

[karlsh]

Hi Jacqui,

I have had two cleft babies. One cleft lip only and one bilateral cleft lip and palate. So I have been the whole gamut. I had two kids under two and they were both cleft babies, so it was operations galore for three years.

I understand how you feel - I read your pregnancy story. It was the same for me (both times) - utterly devastating.

However, I can say my children are now 2 and 3 and totally gorgeous. If you'd like to contact me you can, I'd love to chat and tell you how I've coped and worked it all out.

They both have excellent speech development and are normal cute boisterous children.

it's a hard road, but worth it. I think cleft children are special in nature because of the extra troubles they have to deal with as babies.

[tobysmum]

My 2 yo had a cleft lip. They screened me extensively for my second but all clear. My son had his op at 3 months and everything went amazingly well. He is a gorgeous little boy and people often comment on his perfectly shaped lips! Cleftpals was great...not so much for support for me as his wasn't all that severe ...but for info and hiring arm splints etc.