Babies with cleft palates?

  • My son, Luke, is 3 weeks old and has a cleft palate (in the back of his throat) which makes feeding difficult and frustrating for him and for me. I am a first time mom, and am very new at this! He also has severe gas which keeps him from sleeping comfortably, which in turn makes him even fussier. We tried what our pediatrician recommended ( 4 drops of Bio Gaia a day) but does not help. Next we tried Mylicon, still does not help. It's getting to where he can't sleep more than 20 minutes at a time, and he doesn't sleep very often at that. I'm getting very worried that he is not getting the good rest he needs for him to grow properly and develop right. ANY tips/advice would be greatly appreciated!!

  • Sarah-

    Babies with a cleft palate can be hard to feed.  Did they work with you on this in the hospital before you went home?  I think it would be worth seeing if your doc can refer you over to OT who can help more w/feeding.  He may need a bottle change and a professional eval is def. warranted.  I also wonder if he his swallowing a lot of air due to his cleft and feeding issue and if that is the problem.  I'd give the doc a call.  -Jess

  • I think when you are concerned at this young age, tips from parents may be helpful, but either way you need to consult your doctor and possibly see if you can see a specialist. Early intervention services may also help pay for any services you may need. If you fear your 3-week old baby is not getting proper nourishment, having a doctor fully aware of the situation should be your first step.

  • Poor little guy! How tiring for you as a mom! Is your baby getting pumped breast milk or formula? If formula, perhaps he might try a different type that could be gentler on his stomach? Some mothers I know swear by some infant massage classes to help their babies work out gas and uncomfortable aches/pains. Hang in there with the feeding process - it takes some time and practice for both you and him. Are you using the squeeze bottle to help with feeding? I might do an internet search for some cleft palate support groups in your area and get in touch with one. It can do a world of good to have other mothers you can call for help! 

  • Wanted to check in and see how things are going and if your baby is feeding better.  Just thinking about you! Would love an update when you have time.  :)  -Jess

  • Hi Jess-

     

    This is my second attempt at replying to your post! For some reason it wouldn't let me post my last two replies. So I will make this short with NO medical information (it keeps telling me I can't post because I'm not a medical professional etc etc...) anyway, thanks for the advice. Things are going a lot better with Luke. :) How are you?

    Sarah

  • When my son Matt was born--24 years ago, he was the biggest little surprize. I had never seen a cleft baby, He was born with bi-lateral cleft lip and full cleft palate.He was very hard to feed. I came home with several types of special nipples for him to use.The one that worked best  had a standard nipple but then a large rubber flange on top that helped act like his palate.He always was spitting up.I don't remember him being a real fussy baby.because he spit up so much, he got feed more often then normal.Have you tried different types of formula, such as soy formula. Also Platex disposable bottles work well also, not as much air gets in the tummy. He could also have acid reflux,you could ask next time you see the DR. don't worry, he will grow up before you know it.My son is a normal happy young man. One piece of advise is to be very dilligent with him when it comes time for dentist visits. make sure he is comfortable with the dentist.My son turned into a really stubborn little guy when it came time for dental work. the cleft is usually repaired when they are about 1year old. and he will have to be weaned off the bottle before the surgery so stock up on sippy cups. lol good luck.

  • Sarah-

    So sorry for the posting trouble, I will forward that on to our technical crew and see if they have any thoughts.  Computer issues are NOT FUN!  I'm so glad to hear that the little one is doing better.  Keep up the good work, it sounds like you are making strides.  Please feel free to post anytime that you have questions or need support, and I'll try to problem solve what may be going on with posting issues.

    Take care, Jess

    :) Ps-I'm doing really well, thanks for asking. :)

  • I'm glad to hear that things are going better feeding wise. It takes time for any parent to adjust to feeding routines and tricks - not to mention when you are working with a cleft palate. Way to hang in there! My girlfriend has a little girl who had a cleft palate. She got it all repaired at a year old and you'd never know she had it. :-) She still works a bit on some feeding issues because she is sensitive to things in her mouth but she is thriving nicely. :-)