I enclose an e-mail from Jacalyn Miller, who has produced a pamphlet on
breastfeeding and cleft palate. She hopes to have a web site up and running
by May 21st (just a few more days). Her pamphlets will be available for
sale via the web site. What you see here is just the forward, the
introduction, and some comments/endorsements. This is another resource in
all the wonderful efforts all of you are doing to help all mothers and
babies breastfeed.
> Jacalyn Miller
> RR#3, Innisfail, AB, Canada
> T4G 1T8
> ph(403)227-5641 fax (403)227-2929
>
>
>THE CONTROVERSIAL ISSUE OF BREASTFEEDING
>FOR INFANTS WITH CLEFT PALATE
> copyright 1997
>
>Research material in this publication was compiled by
>
>J. Grant Miller, B. A.,LLB.
>and
>Jacalyn Hudson Miller, President
>Alberta Cleft Palate-Craniofacial Foundation
>
>in collaboration with
>
>The Rocky Mountain Institute of Anthropology
>RR#1, Bowden, AB, Canada TOM OKO
>Ph./Fax (403)224-2992
>email: <[log in to unmask]>
>
>
>FOREWORD
>by Dr. Shawn Haley, B.A., M.A., Ph.D.
>Professor of Anthropology, Red Deer College
>Red Deer, Alberta, Canada;
>also on the faculties of
>Columbia Pacific University, San Rafael, CA
>and
>Senior University, Casper, Wyoming;
>Director, Rocky Mountain Institute of Anthropology;
>Former International Research Officer,MENSA INTERNATIONAL
>1992-1994
>
> "Just when we thought all of the work on cleft palate and
>breastfeeding was done, the patients are telling us otherwise.
> The authors of this publication are parents of two sons born 20
>years apart, each with cleft palate only. Neither child was able to
>breastfeed naturally at birth. At four months of age, the second child had
>corrective surgery and was consequently able to successfully breastfeed
>naturally.
> The authors noted significant discrepancies between their
>experience and what they read and were told by some well-meaning medical
>professionals and paraprofessionals. They began to investigate further,
>and encountered the pervasive myth that infants with cleft palate can
>breastfeed "if the mother just tries hard enough".
> All too often, practitioners and researchers, like ourselves, focus
>too narrowly on the condition. We consult with fellow specialists and we
>consult the literature. We forget to consult with the most important people
>- the patients (and their families). The Millers, using time-tested
>anthropological techniques to allow the patients and their families to tell
>us about their experiences, remind us of this oversight.
> We must remember that anecdotal evidence is not the opposite of
>formal rigorous scientific research; rather, it is its compliment. Instead
>of dismissing such anecdotal evidence on the subject of cleft palate and
>breastfeeding, it would be far better to conduct new scientific studies as
>a test, both of the anecdotal evidence and of the possibly outdated or
>incomplete scientific studies."
> Dr. Shawn Haley
> March 1997
>
>INTRODUCTION
>
> As we began to investigate the topic of cleft palate and
>breastfeeding, we encountered three main problems. We will outline these
>problems and our beliefs about them, and then expand on each one in greater
>detail in the body of this publication.
>
> #1 -- Many medical professionals do not seem to be aware of the
>health benefits of breastfeeding and of breastmilk itself, such as its
>antibacterial qualities and the healing lyzosymes it contains, which
>artificial formulas cannot duplicate. Even with farm animals, who are
>worth money to the farmer, great effort is made to get mothers to "nurse"
>their young, as well as to feed newborns the concentrated, nutrient-rich
>colostrum or "first milk", if for some reason natural feeding is not
>possible.
>
> We heard many comments from medical professionals such as " We
>don't want to make the mother feel guilty: we let the mother choose (what
>to feed her cleft-affected infant) "; although in many cases no attempt was
>made to inform the new mother about the superiority of feeding breast milk.
>
> We strongly believe that this type of "cover-up", or perhaps benign
>neglect of all pertinent information, however unwitting, would not be
>acceptable to consumers in other areas of medical practice. Through our
>research, we are convinced that women as new mothers in this information
>age want to be informed of the pros and cons involved in their health care
>choices, and that the majority of mothers want the best possible health
>for their children, even when it involves some personal sacrifice.
>
> Conversely, other medical professionals who are quick to recommend
>that a mother artificially harvest her own breast milk seem unaware of the
>logistical and time demands of this very demanding choice. Therefore, they
>fail to acknowledge the heroic effort these mothers are making for the
>present and future health of their cleft-affected infants.
>
> #2 -- We found the available published literature about
>breastfeeding and clefts, upon careful reading, to be inaccurate at best,
>and damaging at worst.
>
> Many mothers of cleft-affected infants encounter well-meaning but
>inaccurate advice and information about breastfeeding and clefts, causing
>them to feel like failures, sometimes causing their infants to miss out on
>receiving the many significant health benefits of breastmilk, and sometimes
>even causing serious health problems for the infants due to dehydration.
>
> Many medical professionals and paraprofessionals seemed unaware of
>the practical and relentless feeding challenges often presented by even a
>small cleft. Even professionals who work in cleft care are sometimes
>unaware of the phenomena of nasal regurgitation, as they do not see these
>infants consistently after feeding. We had researched for the first four
>months before this phenomena of nasal regurgitation was mentioned by a
>doctor (himself the father of a cleft-affected child).
>
> We found that too often, "experts" accept the common misconception
>that the size of the cleft correlates with the degree of feeding problems.
>Actually, the limited medical literature on this topic and our own research
>supports just the opposite premise.
>
> #3 -- Due in part to the lack of accurate information about
>breastfeeding and cleft concerns as mentioned above, most doctors will not
>consider doing surgery on even a cleft of the soft palate any earlier
>than six months of age. We consider this an unfortunate position to take,
>because six months is the time limit we found that Mother Nature imposes
>on the infant if full and natural breastfeeding is ever going to be
>established.
>
> As our research progressed, we were amused to find that established
>champions of breastfeeding considered us to be against breastfeeding; while
>the doctors we encountered, in general, considered us to be breastfeeding
>fanatics! Why must we be classified in one category or the other?
>
> We strongly believe that we can and should all work together to
>ensure that mothers get timely and accurate information about clefts and
>breastfeeding. We also believe that mothers who wish to obtain early
>surgery for their cleft-affected infants who might have a good chance of
>establishing full and natural breastfeeding for a longer duration than the
>mothers can pump their breastmilk, have a right to do so.
>
> For these purposes we have written this publication.
>
>
>COMMENTS:
>
>
> "I am very impressed, not only with the booklet, but with the level
>of research that went into it. It is beyond a doubt the best researched
>work on this subject...
> ...this is really a terrific piece of work and they (the Millers)
>should be very proud that they are presenting something of substantive
>value to the body of knowledge concerning cleft that may give future
>mothers of cleft-affected children a more positive experience."
>
> --Joanne Green
> Director, Wide Smiles
> Stockton, CA
> June 20,1996
>
> "I critiqued your work with a "fine tooth comb" -- you have my
>endorsement." (Our material has been used in her "suck" class in Nov.'96.)
> --Chele Marmet
> Coordinator of the Lactation
>Institute
> Pediatric Dept., UCLA
> 16430 Ventura Blvd, Suite 303
> Encino, CA 91436
> May 1, 1997
>
>
> "...you have made your point very well indeed. You are to be
>commended for pulling together so much information in such a clear fashion.
>Congratulations."
> --Marion Viglione, social worker
> Regional Cleft Palate Program
> Camden, New Jersey
> June 18, 1996
>
>
> "I reviewed the document carefully and would like to congratulate
>you an a nice summation of very difficult literature..."
>
> --Ginny Curtin, RN,MS,PNP
> Clinical Nurse Specialist,
>Children's Hospital
> Oakland, CA
> July 8, 1996
>
>
> "It is great to see a booklet that attempts to provide mothers with
>accurate information on breastfeeding infants with cleft
>palates...Misinformation about the successfulness of breastfeeding these
>infants gives the already overwhelmed mother a sense of failure."
>
> --Lorine Scott RN BSN
> Nurse Clinician
> Cleft Palate/Craniofacial program
> British Columbia Children's Hospital
> Vancouver, BC, Canada
> July 11, 1996
>
>
> "Thank you for your letter re: your son's early cleft palate
>repair. I am delighted that you were able to breastfeed. I think that
>finding plastic surgeons who, like Dr. Butts, are willing to do an early
>repair are the key to resolving the very real issues which you raise."
>
> --Dr. Evelyn Jain, CCFP, IBCLC
> Family Physician and Lactation
>Specialist
> Calgary, Alberta, Canada
> March 25, 1996
>
>
> "This is what consumers should be doing in every area of health
>care -- questioning traditional wisdom." --Dr. Sam
>H. Boutros, F.R.C.O.G., F.R.C.S.(C.), F.A.C.O.G.
> Head of Obstetrics, Red Deer
>Regional Hospital
> Red Deer, Alberta, Canada
> Fall 1996
Katherine A. Dettwyler, Ph.D.
Associate Professor of Anthropology and Nutrition
Texas A&M University
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