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Any Cleft Palate & nursing families?

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  • Any Cleft Palate & nursing families?

    Hi-
    We are the proud parents of three children. We have a beautiful brand new baby boy, born peacefully at home at a lovely planned, attended water birth. He has an undetected unilateral cleft lip/palate.

    We spent his first night (last night) at the NICU for observation & analysis (he is perfect in every way) and came home late yesterday morning. He is able to latch correctly, but I am still pumping every 2 hours to supplement. I am using the dropper instad of the haverman nipple and have been able to pump quite a bit of colustrum. He's had several wet diapers & is doing extremely well in that department.

    He's brand new & we're brand new to being "special needs" but have been practicing AP since 2003. We're caring for our son in the best way we know how- by nursing, keeping skin to skin contact, swaddling, cloth diapering, and cosleeping. We just can't help the falling madly in love part.

    I'd love to talk to any other AP families/nursing mothers about nursing & parenting a baby like ours.

    Many thanks!

  • #2
    Congratulations on your new baby! I am mom to a cleft affected baby, though his palate was intact, so only his lip was affected. I know that there are additional challenges with nursing when the palate is involved, and there is currently a discussion about overcoming those challenges on a yahoogroup I belong to. It's called cleftchat and the URL is http://health.groups.yahoo.com/group...?yguid=3870113 This is a really helpful group, so I'd definitely recommend joining it. There are a number of mamas on there who pumped every two hours for a couple of months until their babies have surgery and can bf on their own. It sounds like your son can latch on though, so that's amazing in itself. My son could not latch on without the use of a nipple shield, so we used one of those for several months and pumped a lot too.

    My son's cleft was not detected before birth either, so we were not prepared, but sometimes I think that's better. I hear from a lot of parents who are completely freaking out through their pregnancies trying to gather info and prepare, and I'm thankful that we had a peaceful pregnancy.

    Your first step will be to choose a plastic surgeon. The yahoogroup can help you with that too. You'll want to find the nearest craniofacial team if you can b/c they provide kind of a one-stop-shop for care which is awesome, IMO. The team is made up of a plastic surgeon, speech therapist, psychologist, othodontist, and an ear, nose, throat specialist. Also, depending on what state you are in, there may be a program to help with additional medical bills. You do not have to be "low-income" to qualify for these in some states.

    I'll pm you with my contact info in case you have additional questions. And I hope you'll contact me when it comes time for surgeries, b/c I can definitely give you some tips about how to make those easier on both yourself and your son. For example, I can help with advice about telling your PS that you will nurse after surgery and give you info about the best (most gentle) arm restraints made that you'll want to order in advance of surgery, but no need for those things now.

    My husband and I were like you, so in love with our baby and we almost didn't even notice his cleft when we looked at him. That said, I know it can be overwhelming as you begin to seek informations, so please do not hesitate to contact me.

    Again, congratulations!

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    • #3
      Christina-
      Thank you so much for your response & email. I greatly appreciate your time!

      I will join the group & will certainly email you- we're adjusting to life at home right now but I wanted to say how much I appreciate your response.

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