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New to the group

Brittany - posted on 02/11/2010 ( 1 mom has responded )

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Hi my daughter was born on January 12 with a cleft palate. It wasn't found by any doctors or even my midwife at a home visit. I found it the weekend after she was born and told her pediatrician at her first office visit at a week old. At that time she had lost 13 oz due to inability to eat (i was trying to breast feed and supplimenting with an SNS feeder). Now, she eats with a Medela Special Needs Feeder
(Haberman bottle). She still has issues with formula coming out her nose. Especially when she lays down. I know she will need tubes at 3 months old. We've already met with the ENT. Does anyone else have a cleft palate team? What age can I expect her corrective surgery? The websites I've looked at are all over the place.

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Robyn - posted on 02/14/2010

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Congratulations on your daughters birth! My oldest was born with a unilateral cleft lip/palate. He has a craniofacial team at our local childrens hospital. All doctors set corrective surgery at different months. My son's palate was repaired at 11 months of age. I would try to have the palate surgery & tubes put in at the same time if possible. Since my son had his lip repair at 3 months & there was fluid in his ears we had the tubes put in place then - but some doctors are willing to wait to later (I was not & I pushed the tubes earlier). Just talk to the doctors & discuss what you feel is best for your child.



Formula coming out of the nose is completely normal.. wait till she starts eating solids ; ) Please let me know if you have any other questions!

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