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Cleft of the soft palette experience?

post #1 of 5
Thread Starter 

My son was born 2 days ago with a cleft in his soft palette. I'm pretty confident in my ability to get good medical advice. There is a team locally that is supposed to be awesome in dealing with clefts and I used to work in a library that specialized in oral facial issues. I've also found several articles on this at Kellymom.


At the hospital the occupational therapist was great about getting us a bottle with a nipple insert valve that worked. She was also very encouraging about me getting my milk into him any way possible. Right now I'm using formula (until my milk comes in) and I'm pumping all the time. He'll do a messy sounding improper latch and seems to be liking it so we keep trying to nurse as well. 


What I really want to know about is feeding. The prospect of pumping all the time for months on end saddens me. 


My oldest child is adopted and was totally bottle fed. My second child is bio and we had a great nursing relationship. I know the "ease" in both sorts of feeding and it seems I'll have the uneasy traits of each form of feeding. 


I guess I'd just like a little encouragement.

post #2 of 5

Hi Masel,


My daughter was born with a cleft lip and palate. I pumped for 6 1/2 months and nursed  whenever I could. I have a friend whose baby was born with a cleft of the soft palate. She managed to nurse exclusively for three months, then gave up for other reasons.


Pump as frequently as you can with the best pump you can afford to get your milk production going.


When my daughter nursed she made a lot of noise (I could hear the milk letting down - I guess the noise escaped through her noisewink1.gif).


Have you thought of trying an SNS or Lact-AId? That way your baby would be encouraged to nurse more and would help build up your supply. The Lact-Aid can be converted to make flow easier (they send you the instructions on how to do this if you specify why you're using it when you order). The Lact-Aid can be converted permenantly by making a small hole in it increasing rate of milk flow (let me know if you would like me to explain this further).


Some mother alternate the breast and bottle at the same feeding. For baby's who are supplemented. If your baby is doing pretty well at the breast and you think that there is a chance that you will be able to eliminate the bottle, then you could use another method to feed the supplements in the meantime to encourage the baby to satisfy his sucking needs at the breast).



post #3 of 5


First of all, congratulations on the birth of your son!


7 years ago my daughter was born with a cleft of the soft palate, and I didn't know that she would have a feeding issue until she was 3 weeks old and losing weight and my let-downs were decreasing.  I was deeply sad to learn that she was not able to breastfeed.  I rented a hospital grade pump (the Medela Symphony) and continued to pump for 7 months and fed her with the Haberman.  I tried to give her positive experiences at the breast before giving her the bottle, but around  4 months she wanted the bottle right away!   Sometimes I did not have enough milk and I would give her formula.  Her surgery was at 5 months, and at 7.5 months, with some encouragement, she began breastfeeding.  A few weeks after surgery she took a regular bottle nipple and so I knew that she had vacuum suction.  Then, when she was happy to be near my breast, I used a syringe and gave her some milk and she finally latched on to my breast.  I contacted others who had had this experience, and learned that some babies went back to the breast at 9-10 months of age .  I learned a lot by studying re-lactation (how adoptive mothers learn to breastfeed) and also had a couple of appointments with lactation consultants who were experienced with cleft babies.   Pumping was difficult and looking back I wish I had been more gentle with myself  this time (I traveled a lot with the pump and looking back, I wish I would have just stayed close to home instead of trying to do too much....).   Pumping did begin to feel normal, and eventually the milk came out very quickly. I remember pumping every 3 hours, and sometimes more than that in times of low supply.  I don't know how old your bio child is, but if he she still knows how to breastfeed, a few suckles from him could stimulate your milk supply. 



post #4 of 5
Thread Starter 

I come to terms with pumping since those first early days. I'm hooked up as I type!


He nurses for a little while every day and even though he doesn't get much milk the experience seems to relax him. 


I tried a SNS with my adopted daughter and we didn't really like having tubes in the way. 

post #5 of 5

It's great to hear that things are going well!  That's so wonderful that your baby is able to nurse as well :)  I also tried the SNS and my daughter was very distracted by the tubes. What worked for me after surgery was using a large plastic syringe (50 ml or 100 ml, given to me by a LC) to get the milk into her mouth.  It was much easier to handle.

Enjoy these newborn days :)

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