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Thread: Help...Nursing a baby with cleft palate

  1. #1
    Join Date
    Aug 2012
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    Default Help...Nursing a baby with cleft palate

    Does anyone have suggestions for nursing a baby with soft palate cleft. I want to nurse my little girl so badly she is my 5th child and she can not get enough suction to get my milk out. I have been pumping and still put her to breast with a shield to comfort her. The surgeons dont do surgery until she is 9 months. Does anyone have experience with this and if so were you able to nurse after the surgery? Thank you

  2. #2
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    Feb 2008
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    SoCal
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    Default Re: Help...Nursing a baby with cleft palate

    Hi mama. We have two mothers on here who have, try to search of the threads, I will look too.


    http://www.llli.org/search?cx=012805...=1835j931365j5

    In general
    Mommy to Maxwell 10-9-07 weaned with love (a party and a remote control monster truck) on his 4th birthday
    My Boy 3-16-10
    And my sweet pea Sam 2-12-11

    Watch Your Language

  3. #3
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    Default Re: Help...Nursing a baby with cleft palate

    This one is mainly pictures I think but the 2 moms I'm speaking of contributed, Dara and aprilsmagic

    http://forums.llli.org/showthread.ph...lip-and-palate
    Mommy to Maxwell 10-9-07 weaned with love (a party and a remote control monster truck) on his 4th birthday
    My Boy 3-16-10
    And my sweet pea Sam 2-12-11

    Watch Your Language

  4. #4
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    Default Re: Help...Nursing a baby with cleft palate

    Thank you so much! I will look at these now

  5. #5
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    Default Re: Help...Nursing a baby with cleft palate

    Mommy to Maxwell 10-9-07 weaned with love (a party and a remote control monster truck) on his 4th birthday
    My Boy 3-16-10
    And my sweet pea Sam 2-12-11

    Watch Your Language

  6. #6
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    SoCal
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    Default Re: Help...Nursing a baby with cleft palate

    They check in here a lot so keep checking back.
    Mommy to Maxwell 10-9-07 weaned with love (a party and a remote control monster truck) on his 4th birthday
    My Boy 3-16-10
    And my sweet pea Sam 2-12-11

    Watch Your Language

  7. #7
    Join Date
    Apr 2009
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    Default Re: Help...Nursing a baby with cleft palate

    Hi Momma,

    Welcome ot the forums. My son was born almost 7 years ago witha complete unilateral cleft lip and palate. Basically he was born with a hole in his face exteding from his nose to the back of his throat. he was in no way able to nurse from me for numerous reasons.

    What I did was pump for him, I pumped for 11 months and he was fed via special bottle, we used the Haberman bottle for my son but there are several cleft palate nipples out there.

    Do you have a cleft team? Have they given you any advice?

    My son didnt get his palate closed till 13 months, and before that he neded a device in his mouth called an obturator which had to be in 24/7 for the first few months of his life, there was no nursing going on at all, maybe a little comfort sucking when he had the obturator out for a cleaning, but that was far and few and he really didnt want much of it.

    Hang in there momma, even if you cannot nurse, you can give your baby the gift of breastmilk. What I did, was pump after every feed. If I fed my son, I would pump, round the clock
    24/7. I also fed him like a breastfed baby, very small amounts in the haberman frequently thru the day. I used a hospital grade pump, and would pump for 2 let downs. You can store the breastmilk in those playtex drop in bags (they are much cheaper then the Medela milk storage bags).

    Please let us know if you have any other questions!

    (((((((HUGS))))))
    Last edited by @llli*dara; August 11th, 2012 at 04:13 AM.
    Mommy of 4,
    3 who I watch over, 1 who watches over all of us

    J- 8/20/05 pumped breastmilk for 11 months due to his cleft lip and palate!

    M- 10/17/07 my precious baby lives forever in her mommys heart

    M- 3/31/09 my special gift, she helps heal her mommy and daddys heart. Nursed for 4 years and 10 days, self weaned the day her baby brother was born!

    E-, new little miracle born 4/11/13, my BIG baby! Born 8.6 at 38 weeks. At 9 weeks nearly 17lbs, at 12 weeks nearly 20lbs, at 6 months nearly 23lbs, at 8 months nearly 25lbs and all from BREASTMILK


  8. #8
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    Default Re: Help...Nursing a baby with cleft palate

    Mama, my fourth baby was born with an incomplete cleft of the hard palate and a complete cleft of the soft palate. I tried very hard to nurse him, but it just didn't work out.

    I would try using a Lact-Aid. It actually worked for us for a while, but the pumping, the feeding, the topping off, the pumping again, the feeding got to me, and I have three other little kids at home (you know how that is!) and I couldn't keep it up, especially after he got some of my milk that had excessive lipase and he associated it with the Lact-Aid.

    But in thinking about how I would do it again:
    I would pump to maintain supply. This is a lot of pumping. 120 minutes broken into 8-12 session every 24 hours for at least 12 weeks before backing down.

    When baby is hungry, I would feed a bit via a cleft feeder or however baby is taking milk.

    I would put the Lact-Aid on. It has to be used upside down. If you decide you want to try it, when you order, ask them for the cleft feeding instructions.

    Nurse baby so baby always has the association of feeding at the breast. It may help preserve the instinct so she will nurse post-op. I had hoped and prayed for it, and I was devastated whe he refused after surgery. But I hadnt kept trying, and he didnt have the finish at the breast going on.

    Even if you can't nurse at the breast, she can still have breastmilk, and it's even more important for a baby with a birth defect.

    But I get how sad you are....I still tear up sometimes at how my very likely last baby didn't get to nurse. Breastfeeding is so important to me. And EPing is a huge challenge. I basically put my entire family on hold for a year so I could pump. The first 3 months, we didn't leave the house much, and I pumped in the car while driving a lot. Once I could go every 4 hours, it was a little easier, every 6 easier too, but it was very hard, as I couldn't go anywhere where I would have to pump...who would keep the kids from running off? And once the baby was older, pumping was a challenge. But I did it until he was over 18 months old and he refused my milk, so at least he weaned himself like his brothers did.

    But he did get to be fed like a breastfed baby...on demand. I know the docs are probably saying feed X amount every X hours. Don't worry about it. Feeding on demand is OK. And pump every 2-3 hours around the clock.

    Many hugs. Being a mom of a cleft baby when you have other children Is a special calling
    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!

  9. #9
    Join Date
    Aug 2012
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    11

    Default Re: Help...Nursing a baby with cleft palate

    Thanks for the advice ladies. I have a cleft team I am working with but there isn't really breastfeeding support there. I do however have a wonderful lactation consultant I'm working with. What is a lact aid?I have never hard of it. I am using a haberman bottle to fed her. I am trying to build my milk supply with a lactina pump. So I am supplementing with formula. I am going to try and pump more it has been really hard with all the dr.appts and tending to my other children but my goal is to give her all breastmilk no formula.

  10. #10
    Join Date
    Feb 2010
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    239

    Default Re: Help...Nursing a baby with cleft palate

    A lactaid has a bottle of (your) milk you hang up in the air with a little tube that comes down and tapes to your breast with the end of the tube at your nipple. When you baby tries to nurse, they get any milk you let down plus extra from the bottle through the tube. Medela sells something similar, but the lactaid one can be set up for cleft babies so that they don't have to suck at all to get milk through the tube; it just drips. With a cleft baby, they may never really get let downs, since they can't suck, but at least this way they get the sensation of nursing paired with milk.

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