Kimberly,
Babies with soft cleft defects present many challenges. My fourth child was
born with a submucous cleft of the soft palate and I had a devil of a time
trying to breastfeed her. She could not breastfeed at birth as she was unable
to mount the suction to elongate the nipple. I consulted cleft palate teams
in NY, NJ and Pa and met with several IBLC's. (Call the toll free directory
assistance to get the number of the Cleft Palate Foundation for specific
information and a list of expert cleft palate teams in your area). I looked
in many medical textbooks and searched the literature. There really is a
dearth of research based literature to guide practice. I talked extensively
with other parents of children with clefts and joined an on line support
group called Widesmiles. No one really could tell me if all my efforts would
payoff and I found the lack of consistent advice frustrating. I was
completely exhausted from trying to pump every three hours and trying to feed
my baby (and take care of three other children). My baby struggled so much
trying to maintain energy reserves to eat enough to fill her needs. Babies
with clefts are exceedingly difficult to feed no matter what method is used.
Feedings seemed almost continuous around the clock. I tried the SNS, cups,
fingerfeeding and bottles to no avail. What finally worked was the Haberman
feeder. I would always start a feeding by putting my daughter on the breast
and trying to will a letdown through massage and visualization of waterfalls.
I tried to keep her close to the breast throughout the day so she would be
familiar with it. Then I would pump while my husband fed her EBM by Haberman
from the previous pumping. This finally succeeded in helping her to gain some
weight. It wasn't until three months that she was able to breastfeed
completely on her own. I always felt that she had the potential to breastfeed
because her soft cleft was covered by a mucous membrane. With a submucous
cleft there is no hole on the surface of the soft palate so suction is
potentially possible. Her problem was a significant and symptomatic clefting
of the muscles underlying the membrane. I think that weight gain and exercise
of these muscles from so much attempted breast feeding eventually maximized
the coordination of her clefted muscles. Oh what a joyous day when she was
finally able to breastfeed!!! I remember thinking that I would breastfeed her
until 60 to make up for those awful first months!!
You did not say exactly what type of soft cleft defect this baby has and I
think that this is an important piece of the puzzle. In my contacts with
other parents I found that babies with even very small open clefts of the
soft palate had much harder times breastfeeding than babies with cleft lips,
submucous clefts or clefts of the hard palate. They just could not generate
suction. I talked with many very motivated mothers who had solid bf
experience with other children and they COULD NOT bf their babies with open
soft palate clefts. Some were very heartbroken after herculean efforts. They
need a great deal of support. I don't know if this particular mother will be
successful or not, however research by Paradise from Children's Hospital of
Pittsburgh demonstrated less otitis in cleft affected babies who were fed
breastmilk. Repeated otitis often plagues babies with clefts and can lead to
hearing loss.
Good luck.
Roberta Cricco-Lizza RN MPH MS
PhD Candidate NYU

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