Any Cleft Lip and/or Palette Moms?

Re: Any Cleft Lip and/or Palette Moms?

• cranberry27

  March 2009

  I'm a speech therapist who has worked with five very different kids who have had cleft lip and/or palate repairs. ?I have always seen them after their cleft was repaired, so I can't speak to the early parts and surgery itself. ?What I can tell you is that, by the time I saw them (between 2 and 5), they were amazing kids doing well in school and going through life like any typical child of that age. ?They were getting speech support to make sure that their articulation skills were good so that people could understand them clearly. ?Sometimes help is needed for feeding after the repair just to make sure everything is moving correctly and they develop the correct patterns.

  Before a cleft repair, many babies need help with feeding, and your doctors should be able to get you the help that you need for that. Early Intervention is a great resource. ?Once upon a time, surgeons would go in and do a repair to make everything "look pretty," but didn't pay enough attention to how well the child's oral structures functioned. ?Now, there are cleft palate teams that work together carefully to make sure that the child's structures are repaired so that they WORK correctly, meaning that muscles are placed, airflow is sealed off, etc, and results are much better. ? Finding a great cleft palate team is really important, even if it requires some driving.

  Cleft lip/palate is a widely diverse diagnosis and no two cases are alike. ?There may be support available in your area - your cleft palate team might be able to refer you.?Best of luck to you and your LO!

  

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• addison_clark

  March 2009

  Not that I can be much help, but my sister (who is now 22) was born with a severe cleft lip- not palate.  She had 2 surgeries to correct them, one when she was an infant and one when she was a toddler.  To this day, you would never guess she was born with it.  My mom did have trouble feeding her when she was an infant though but that was really the only side effect.

  

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• EnglishMajor03 member

  March 2009

  DD doesn't have a cleft lip/palette but has other oral issues.  Since birth we knew BF was going to be hard so we opted for a special bottle that we were told was used extensively on cleft lip/palette babies.  It's made by Medela and there is a Mini-Haberman or Haberman bottle.  The mini just has a smaller length nipple than the haberman.  It works so that the baby just presses the nipple with their tongue and the formula or breastmilk comes out.  I'm sure the dr's will tell you all about this bottle, but I felt better letting you know.  Good luck with the rest of your pregnancy.

  

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• C&H member

  March 2009

  My ds was born with a cleft lip and Palate. He had his lip and palate repair done before he was one. I had several u/s and it was never caught so we were very surprised and unprepared for the feeding issues that come along with it.

  Feel free to email me at gamock28 at hotmail dot com and I can share more with you.

  Heather

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• susanmosley member

  March 2009

  cranberry27:

  I'm a speech therapist who has worked with five very different kids who have had cleft lip and/or palate repairs.  I have always seen them after their cleft was repaired, so I can't speak to the early parts and surgery itself.  What I can tell you is that, by the time I saw them (between 2 and 5), they were amazing kids doing well in school and going through life like any typical child of that age.  They were getting speech support to make sure that their articulation skills were good so that people could understand them clearly.  Sometimes help is needed for feeding after the repair just to make sure everything is moving correctly and they develop the correct patterns.

  Before a cleft repair, many babies need help with feeding, and your doctors should be able to get you the help that you need for that. Early Intervention is a great resource.  Once upon a time, surgeons would go in and do a repair to make everything "look pretty," but didn't pay enough attention to how well the child's oral structures functioned.  Now, there are cleft palate teams that work together carefully to make sure that the child's structures are repaired so that they WORK correctly, meaning that muscles are placed, airflow is sealed off, etc, and results are much better.   Finding a great cleft palate team is really important, even if it requires some driving.

  Cleft lip/palate is a widely diverse diagnosis and no two cases are alike.  There may be support available in your area - your cleft palate team might be able to refer you. Best of luck to you and your LO!

  I too am a speech therapist and think this answer is perfect!  Early intervention is going to be key for any feeding issues.  There are great medical teams out there who will be able to get you all set and prepared for the initial needs.

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