Louise,

My daughter Eliza was born with a submucous cleft palate with the classic
triad of signs(bifid uvula, short, transparent soft palate and notching in
the posterior portion of the hard palate)and was very symptomatic from
birth(unable to suck, bilateral ear effusions and nasal regurgitation). We
labored  mightily for three months before she was able to be completely
breastfed and what a source of joy this was for both of us! Last June , at 25
months she had her soft palate reconstructed because of speech problems. We
consulted  three cleft palate teams in NY, NJ and PA and found no support for
breastfeeding. I honestly believe that many plastic surgeons have no
experience with cleft babies who are breastfed and base their decisions on
other premises. My surgeon recommended no breastfeeding for three weeks and
full arm restraints during this time. My husband and I were horrified! I did
not want to wean my daughter at such a needy time but also did not want to be
blamed for ruining her plastic repair if she should have an adverse outcome.
 One very helpful reference was:
Cohen,M., Marschall,M., &Schafer, M. (1992). "Immediate Unrestricted Feeding
of Infants Following Cleft Lip and Palate Repair."The Journal of Craniofacial
Surgery(3),no.1, P30-1.
Dr Cohen  found no instances of wound complications in those infants  with
unrestricted feedings. He is at the University of Illinois Division of
Plastic Surgery and was very helpful when I called him. I believe that his
series of babies is now up to 450-500 from the 80 that is reported in the
study. I also contacted Barbara Wilson Clay IBCLC and Sarah Coulton Danner
CPNP IBCLC for their sage advice and experience.
My surgeon believed that since my daughter was an experienced nurser (with
suction) that she might put greater tension on the suture line .I do believe
that this is a legitimate concern with a soft palate repair. I compromised
and decided to play it by ear. She was so uncomfortable and shocked from the
surgery that she didn't want anything in her mouth up til 6 days postop. She
went back to the breast at that time without problems ,although I noticed
that her suction was weeker for a few weeks. I never used the restraints
----My husband and I just held her constantly and were vigilant about not
allowing her to go near the incisions. She has done well since then.

 I would recommend more discussions with the surgeon. I supplied mine with
Jon Ahrendsen's web pages about the advantages of bf, Paradise's study on
cleft palate infants,breast milk and decreased otitis,and Cohen's study cited
above. You need more details about the size of the defect,the type of repair
and the amount of tension on the suture line. Good Luck!

Roberta Cricco-Lizza RN MPH MS
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