cleft lip and palate

[ehmom]

i was wondering if anyone out there has any experience breastfeeding a baby with a cleft lip and palate. an ultrasound revealed that our little munchkin (due july 24) will at least have a unilateral cleft lip. i know that they can have trouble latching on. some are only able to eat with a special nipple. any input would be welcome!!
thanks

[Rachels]

I admire your commitment to breastfeeding! I don't have much advice for you, but wanted to suggest that you post to the breastfeeding forums at www.mothering.com , which have lots of LCs answering questions. I also wanted to suggest that you find a good private LC in your area. Hospital LCs can be iffy, and you're going to need someone really knowledgeable and committed to help you.

I'm sure your ultrasound must have been distressing to you, but wanted to say that you won't believe the joy you're going to feel when your little one arrives! We can't wait to celebrate with you!

-Rachel
Mom to Abigail Rose
5/18/02

[stillplayswithbarbies]

One thing you can do is get in touch with your local La Leche League ( http://www.lalecheleague.org ) and go to their meetings now while you are still pregnant. They can point you to local resources and may be able to help you there. Even if they have no experience, they will be supportive and help you in any way they can.

Also check out a Yahoo group called "breastfeeding". There may be people there with experience in your situation.

Like Rachel, I admire your commitment to breastfeeding. It is fortunate that you have time to do some research and be prepared before baby is born.

...Karen
Jacob Nathaniel 2/27/91
Logan Elizabeth 3/25/03

[egoldber]

First, congrats on your upcoming little one! I did a quick search, and found this link at breastfeeding.com (which is a nice site). : http://breastfeed.com/resources/articles/momsmilk.htm

I also looked in the LLL's book "The Womanly Art of Breastfeeding", the Sears "Breastfeeding Book" and "The Nursing Mother's Problem Solver". All had a few pages about nursing and cleft lip. It sounds like LLL will be your best bet. Their book says that they have a special pamphlet available for nursing a baby born with cleft lip.

From reading through those books, it sounds like a baby with cleft lip usually experiences few problems breastfeeding. Cleft palate can be more challenging since that introduces a suction problem, so many moms need to pump at first until their babe's latch becomes stronger.

Good luck and keep us informed!

[dueinmay]

Hi there,

I don't have experience breastfeeding a cleft lip & paalte newborn, but I can offer you some info. I did a little research on this before our baby was born (since I was born with cleft lip & palate, there was a higher chance our baby might, and I wanted to be prepared if that was the case. By the way, just want to say that, in case you are feeling overwhelmed by what lies ahead, it all works out! Despite the surgeries, etc., I had a wonderful childhood and I'm sure your "munchkin" will as well!).

From what I understand, feeding issues will depend on the particular situation (espec how wide the cleft is). There are some aids available to help you breastfeed. (One I have heard of is an appliance called a palatal obturator.) Here is a link to a page that has ALL KINDS of info & help on nursing cleft babies (including the LLL pamphlet): http://www.kellymom.com/links/bfhelp-cleft.html

Ultimately it may be easier on the baby to get your breastmilk from a bottle, since you can direct the nipple to the side of the mouth away from the cleft. You'd want to get a top-grade hospital type pump since you'd be pumping a lot, and see about getting the special bottles that are available.

As I said, I do not have personal parenting experience to speak from, so I think the best advice I can offer is to get in touch now with the team of specialists you plan to work with, who can recommend solutions and introduce you to a lacatation consultant with specific experience with clefts. (If you haven't chosen a team yet, I recommend visiting the website of the American Cleft Lip-Palate Craniofacial Association, where you can find top-notch specialists and get lots of other info, too.) There are other great organizations online that will be able to provide a lot of info and help, too. One is widesmiles.org, which has a listserv and webring to put you in touch with other parents. Another is cleftline.org, and here is a link to check: http://www.cleftline.org/publications/summaries.htm One of the many free publications they offer is this one specifically on feeding.

Hope this info is helpful! Let me know how it goes, and if you ever have any questions you think I could help with, just let me know!

Best wishes & congratulations on your baby :),

Rebecca

It's a girl!
5.14.03

[ehmom]

hey everyone,
thank you all so much for the info and links. we have done some research already and i think we just have to wait and see how everything looks when our baby is born. this is our first pregnancy and we want to relax and enjoy the last 7 weeks doing fun getting ready for baby stuff!! thanks again for all the response!!
emily