Cleft Babies? I've got one!
Posted by: mizim
25th Sep 2011 07:05pm
My darling girl was born in March 2011, and has bilateral cleft lip and palate. I'm always keen to chat to other parents who've been in the same boat.
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Comments 5
Anonymous
mizim
My girl has had feeding issues from day one, ended up in SCBU, and my gut feeling is that due to their treatment of her is half the reason why she no longer takes a bottle, she is fully NG tube fed. She's also had problems with weight gain, but the best thing is that she is still such a happy girl who'll smile at anyone and everyone.
She'll have her palate done in about 5months, then another just before primary school and then another when 8-9years followed by braces. And that's if she doesn't need any extra surgeries.
It's a lot of work with 2 toddlers as well, but she is well worth it. Just wish I could post a photo on here for you. :)
Anne Collins
Hi
My cleft baby was born 36 years ago. She is now a healthy and beautiful young woman. When she was born it was quite a shock, believe me, I had never even seen a person, let alone a baby, with a cleft lip before (back then this condition was referred to as a hare lip - not a kind description by today's standards). She had a single cleft lip, on the left side, and also had a cleft palate. Feeding her was the big problem at first, as the hospital she was born at (Newcastle Mater) had no facilities for babies with this condition. With the help of wonderful nursing staff we managed to get hold of some soft, sqeezable baby bottles and special teats. But even with these items feeding was still quite a trial as it took so long.
When she was a few months old we took her to a specialist in Sydney (there were none at that time in newcastle) for her first round of surgery, to close her cleft lip. Then at the age of 12 months she had her second round of surgery to close her palate. After both surgeries she had to be fed with an eye-dropper for the first few weeks until the surgical wounds healed. That was a very BIG challenge but we got through it.
Over the years since then she has had further surgery - a skin graft to fully close the gap in the roof of her mouth, and an operation to correct her nose (which was slightly out of alignment). As well as all this she has endured years of orthodontic treatment, but she has accepted it all with a stoicism that we can't help admiring.
For all those out there who have babies with clefts - just hang in there because you will get through it. These days there is much more help available than back then in the 1970's.
Cheers
Anne
Anonymous
Hi, I do not have a cleft bub. However, a friend of mine has one (now 24). I also did cleft care in homes for families via a government program in California (again, years ago). My work in the homes mostly dealt with hospital transition, feeding and general health concerns for the bub and the family - and of course, emotional support. Part of this comment has been removed by a moderator as it violates terms & conditions of the Cafestudy forums.
mizim
And she just had her 1st surgery! :D