Leah Rose has what is called a midline cleft in the soft palate.  She is under the care of a plastic surgery team and is being evaluated every so often.  Surgery is planned for 9-12 months of age.  At one visit, the doctor felt that the opening was somewhat smaller than it was on their initial consultation, which is very good news.  It has been mentioned to us that it may close on its own.


Of course, the cleft is complicated by the Freeman-Sheldon Syndrome characteristics of a small mouth small tongue, and small, recessed jaw.  All of these combined makes it very difficult for her to take a bottle.  She is not able to nurse at all.  She had a feeding tube in her nose for the first 9 days of her life.  The nurses were able to get her to feed from a Mead-Johnson Cleft Lip/Palate Nurser.  I was never very successful with it.  After some very frustrating days and nights at home using the cleft nurser, I began experimenting with different bottles and nipples.  She settled on the disposable bottles.  The nipple she preferred was dome shaped and had a long tip.  Unfortunately, I only had two.  I think they came with the Parent's Choice electric bottle sterilizer.  But I couldn't find any of the nipples in the stores anywhere.  I kept trying to get her interested in the Playtex nipple that is similarly shaped, but it's a little more flexible than the Parent's Choice nipple and she didn't like it as well.  She chewed on the nipple instead of sucking on it.


She had to be fed in a sitting position, at least 45 degrees.  This helped to prevent the formula from coming back up her nose.


She preferred the Nuk pacifier and appeared to want it over the bottle at times.  She didn't quite master the art of holding it in her mouth by herself, either with her mouth or with her hands.  But she did try.  I've tried a Nuk nipple upside down for the bottle, but she hasn't quite taken to it yet.


She breathed through her nose, but at times her breathing appeared to be raspy or rattley.  However, she didn't seem to be congestive.  I haven't figured out if this was from her cleft palate or from the facial characteristics from the Freeman-Sheldon Syndrome.  It could have been a combination of the two.


Her right nostril was red, and she had a red patch from her left nostril to her lip.  This could have been just a birth mark.  It got darker when she cried.  The doctors told us it may go away as she grows older.


She started taking anywhere from 3-6 oz. about every 4-5 hours.  She preferred the liquid formula over the powder, probably because it is thicker.  I have recently switched from Enfamil  Lipil with Iron to Nestle's Good Start Supreme.  She seems to be tolerating the Good Start better than the Enfamil.


She also had to be monitored very carefully for ear infections.


UPDATE 4/19/03:  Leah's feedings greatly improved.  She started taking 4 to 6 oz. at a feeding.  Occasionally, she wanted to eat every 2 hours, but sometimes she would go as long as 5 hours without eating.  The Parent's Choice bottles and nipples that I had been using were still working well.  We seemed to have a better handle on not allowing the formula to come back up her nose, but we did still have trouble when her nose was stuffed up.


She could hold a Soothie pacifier and put it in and out of her mouth, but she tended to chew on it instead of sucking on it.


I began introducing some solid foods on occasion.  She tried pears, bananas and potatoes.  She appeared to be tasting and swallowing.  She didn't like the Apple Juice at all.  Her pediatrician suggested that I try the White Grape Juice because it isn't as acidic and wouldn't burn her cleft if it refluxes.  She still didn't taken to Juice, but she loved her little sippy cup.



Be sure to read our journals for more detailed information on her progress.



Click here for more information regarding Leah's genetic syndrome.




Wide Smiles

Birth Defects - Lucile Packard Children's Hospital

Prescription Parents, Inc.

About Face International

Cleft Palate Foundation

Cleft Advocate

Cleft Support.com

The Florida Cleft Palate - Craniofacial Association

Friendly Faces

Genetic Alliance

Let's Face It

Cleft Club - Cleft lip and cleft palate support 

The Cleft Club