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Thread: Partial cleft palate

  1. #1
    Join Date
    Jun 2011
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    16

    Default Partial cleft palate

    We found out today that LO (8 weeks old) has a partial cleft palate. NONE of his doctors noticed it - even the ENT that we were seeing for possible hearing loss. Today we saw a new ENT and he spotted it right away. This explains a lot. LO failed his newborn hearing screen in both ears, failed follow-up testing, now we know that there's fluid in the ears due to the cleft palate (i.e. the hearing loss is fixable!!)

    It's been a struggle to breastfeed him from the start. He latches fine but doesn't seem to suck hard enough and doesn't get much more than an ounce a lot of the time. If I'm really full (such as 5 hours since last feed), he can get 2 - 3 ounces, so I have been working on boosting my milk supply because I think he can get to the milk easier when there's more to be had. It's tough, he feeds for almost an hour, then I give him expressed milk in a bottle (which takes another 20 mins), then I pump. By the time we're done it's almost time to start again. I'm sure some of you know how that goes. Plus he never, ever, ever wants to be put down, so my house is atrocious.

    We have an appointment with the cranio-facial surgeon in two weeks. There we should find out how likely it is that he will need surgery to close the gap at the back of his throat.

    I'd love to hear from anyone with similar experiences.

  2. #2
    Join Date
    Mar 2006
    Posts
    10,440

    Default Re: Partial cleft palate

    Wow. I have a CP baby too. We knew he had an issue prior to birth as we could see a lip malformation on ultrasound, but we could never confirm that he had a palate problem or not. When he was born, we thought we were home free, as the gumline is intact, and the front half of his hard palate is OK, but the back half and entire soft palate is basically missing. I struggled hard to nurse him, but he just could not get enough suction to adequately nurse. So I pump and feed via a Medela Special Needs Feeder (aka Haberman) with nursing as he allows for practice and comfort.

    I'll tell you this... he will need surgery. Long term speech development will require that. But...please continue to nurse him. It's great for his oral development. And you might be able to nurse FT post op.

    Palate repair is usually not done until around 9 months. Some teams do it sooner, some later. There are pros to early, but very much some cons as well. Our team (in Washington DC) does it at 9 months. We had lip revision surgery a month ago and are in the run up to palate surgery.

    However, it does sound like you are going to need to continue to supplement him. And a different feeder might help you get more milk in him faster. The Haberman might be a good option. There is also a pigeon nipple. You can also cross cut a regular old orthodontic nipple, which will allow for more milk to flow faster. There is also supposedly a bottle that you can squeeze that you can buy at the store, but I have not found it. That said, I prefer the odd looking bottles .... it makes me feel better about not being able to BF . I'll put up links to all of this in a minute or two as well as some links here that I and the other cleft mama have going about clefts.

    Hopefully you are using a hospital grade pump to pump. That makes it smoother and faster and easier on you.

    Yeah, I hear you on the destroyed house. I have four kids. I'm EPing. I have a baby who has to be assisted with feeding who can't be put down. I have a job. I homeschool. The house is a mess. Oh well.

    I did meet a mama when we went to meet our cleft team when G was a week old who told me it got easier for her around 4 months. It got easier in some respects, but it's still not easy.

    BBL with links. I have to dig them up, but I wanted to get this out there now.

    Links
    http://forums.llli.org/showthread.ph...%27s+intuition our story
    http://forums.llli.org/showthread.php?t=97939 The cleft thread
    http://www.cleftsmile.org/ LOTS of info
    http://www.cleftsmile.org/infant-feeding-supplies/ feeding, but I have another link on my iPod to other sources
    http://www.widesmiles.org/
    http://www.snugglewraps.com/ TenderCare feeders for post-op
    http://www.galtak.com/nipples.htm if you want to try the long pigeon nipple, go the baby bottle section and they have a bottle set there
    www.selfexpressions.com where I get my Haberman stuff from, as well as most of my pumping supplies and whatnot

    There is a pretty big cleft group at Babycenter, which I visit a couple times a week and have picked up a lot of tips from reading over there. I ignore most of the BF advice, as most of it isn't quite accurate. Or I chime in if I have time. There are a good number who started out EPing but then said they couldn't keep pumping because they dried up, but there's no reason for that if you know what you are doing and get the right support.
    Last edited by @llli*aprilsmagic; June 15th, 2011 at 06:16 PM.
    Susan
    Mama to my all-natural boys: Ian, 9-4-04, 11.5 lbs; Colton, 11-7-06, 9 lbs, in the water; Logan, 12-8-08, 9 lbs; Gavin, 1-18-11, 9 lbs; and an angel 1-15-06
    18+ months and for Gavin, born with an incomplete cleft lip and incomplete posterior cleft palate
    Sealed for time and eternity, 7-7-93
    Always babywearing, cosleeping and cloth diapering. Living with oppositional defiant disorder and ADHD. Ask me about cloth diapering and sewing your own diapers!

  3. #3
    Join Date
    Jun 2011
    Posts
    16

    Default Re: Partial cleft palate

    Thank you so much for all the info - sounds like you've had tough but successful job with your LO. While a CP is not something I'd wish for, it is good to have an explanation for the hearing problems and nursing difficulties. LO did lose weight at birth, and it took him 2 weeks to regain it. By 4 weeks I was feeling a drop in my supply and knew he was skinnier than he should be. He was gaining weight, but so slowly - about 3oz per week.

    That's when I rented the baby scales to see for myself. Nursing alone he was getting 12oz per day. I started pumping (Symphony) and offering him 1oz extra per feed. We're using Medela wide base slow-flow nipples - do you think there's any reason to get the special needs feeder if he's drinking OK from those?

    Since I got the scales, he's gaining 1oz per day. My supply is OK, I can usually pump an ounce or two with each feeding. He does make a smacking sound when he drinks (on both breast and bottle), that must be the release of suction in his throat.

    I was really hoping to have an easier time bfing this time. My first son was attached to a nipple shield the first 9 months due to latch issues as a newborn. I am 100% determined to make it work though. I have two serious auto-immune diseases which are said to be virtually unheard of in ebf'ed babies.

  4. #4
    Join Date
    Mar 2006
    Posts
    10,440

    Default Re: Partial cleft palate

    He should not be taking an hour to feed at all. That contributes to not gaining weight. If he's taking a long time to get milk out of the Medela nipple, it might be worth trying something else. It might help him gain some weight if that's still a concern.

    It also occurred to me... Check out the Lact Aid system set up I have photos of in the cleft thread. Then you nurse, which helps your supply, gets milk into him and makes his chances of nursing post-op much better.
    Susan
    Mama to my all-natural boys: Ian, 9-4-04, 11.5 lbs; Colton, 11-7-06, 9 lbs, in the water; Logan, 12-8-08, 9 lbs; Gavin, 1-18-11, 9 lbs; and an angel 1-15-06
    18+ months and for Gavin, born with an incomplete cleft lip and incomplete posterior cleft palate
    Sealed for time and eternity, 7-7-93
    Always babywearing, cosleeping and cloth diapering. Living with oppositional defiant disorder and ADHD. Ask me about cloth diapering and sewing your own diapers!

  5. #5
    Join Date
    Jun 2011
    Posts
    16

    Default Re: Partial cleft palate

    We had his 2-month appt this afternoon. He is 8lbs 4oz (averaging 1oz gain per day since his 1-month weight-check). I got to see the cleft - it isn't the traditional hole, it's a 1.5cm slit at the back. Think of a nickel sideways on, that's what it looks like.

    Got a Haberman feeder from the breastfeeding support group this morning too. The LC was shocked to hear our news but it all makes sense of everything.

    Did you get insurance to pay for the Symphony?

  6. #6
    Join Date
    Mar 2006
    Posts
    10,440

    Default Re: Partial cleft palate

    With what you describe, it sort of sounds like an incomplete cleft of the soft palate, and from what Dr. Newman told me, it's entirely possible to continue to BF with such a cleft, just like you've been doing.

    So definitely continue to BF....it's GREAT for his oral development!

    Then top up with the Haberman. Hopefully someone showed you how to use it. The teats wear out every couple of months, faster if you give it hard use.

    But yeah, the cleft totally makes sense. I remember reading your original thread and thinking about suggesting a submucosal cleft, but I got distracted and didn't get back to your thread, and then I couldn't find it again.

    No, the insurance company refused flat out to pay for the Symphony and the Habermans no matter how hard I tried or who I talked to. I got letters from the cleft team, the ped, two LCs, everyone I could think of, that explained this was a medical necessity...the stupid insurance company says it's not. I could feed formula I'd change companies, but they have the best coverage available for us, and I don't want to get into pre-existing condition exclusion with Gavin's cleft. The fact they won't pay for the Habermans makes me really mad, as he HAS to eat from those -- he can't suck from a bottle at all (I have tried and tried with various ones) -- so even if I fed formula, he would still be using those.
    Susan
    Mama to my all-natural boys: Ian, 9-4-04, 11.5 lbs; Colton, 11-7-06, 9 lbs, in the water; Logan, 12-8-08, 9 lbs; Gavin, 1-18-11, 9 lbs; and an angel 1-15-06
    18+ months and for Gavin, born with an incomplete cleft lip and incomplete posterior cleft palate
    Sealed for time and eternity, 7-7-93
    Always babywearing, cosleeping and cloth diapering. Living with oppositional defiant disorder and ADHD. Ask me about cloth diapering and sewing your own diapers!

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