Letter To The AmeriFace Board of Directors Mar-31-2015

AmeriFace Board of Directors
President - David Reisberg, DDS

Vice President - Christina Corsiglia, Esq.
Secretary/Treasurer - Teresa Grillo
Todd M. Beutler, Esq.
Erik Kabik, Photographer
Gerry Gedroic Lichterman, Business Owner
Kerry Callahan Mandulak, PhD, CCC-SLP
Cleft Advocate, AmeriFace program

Debbie Oliver, Executive Director
Robin Remele, Program Director
Joyce Bentz, Action Team Leader
-------------------------------------Corey Wyman, AmeriFace Board
Ben Kjar, AmeriFace Board
March 31, 2015

RE: Attorney who purportedly contacted AmeriFace; Facebook post by
Debbie Oliver, Executive Director, Cleft Advocate, AmeriFace program
As of today, the only response to my letter of March 24, 2015 has been notification of bad email
addresses for Christina Corsiglia, Teresa Grillo, Todd M. Beutler, and Kerry Callahan
Mandulak. I am resending my letter of March 24, 2015, along with an updated mailing list that
includes current email addresses for Mr. Beutler and Ms. Mandulak, and inclusion of Ben Kjar
who is not shown with an email address on the AmeriFace Board of Directors website.
My letter requested the identity of an attorney who contacted AmeriFace. Debbie Oliver posted
on Facebook March 13, 2015 at 12:00 PM For more than five years, our organization has been
contacted by attorneys....
I am looking for an attorney, and responded to the post March 14, 2014 at 11:27 PM, Debbie,
who is the attorney, and on what group's board of directors does he sit? BTW, here is a link to
my beta version cleft website, http://www.nosue.org/facematters-org/
Ms. Oliver finally responded March 17 at 9:23pm, in part,
Regarding the name of the attorney and the organization he is aligned with, I will leave
that up to your investigative skills. There are relatively very few actual non-profit
organizations serving the cleft/craniofacial community, so it should be pretty easy to
discern just by clicking around a bit. I am much too dedicated to serving patients and
families to become involved further...don't want to waste any more time on it. Me calling
them out in a public forum will serve no purpose in advancing our mission...
Ms. Olivers response to my simple question was rude and disrespectful: I will leave that up to
your investigative skills and it should be pretty easy to discern just by clicking around a bit.
What I discern is that Ms. Oliver is bigoted toward adults like me with a congenital craniofacial
disorder. I did not request Ms. Oliver become involved further or to waste any more time
calling them out in a public forum. No, I just asked for a name, not all the other nonsense.
I am providing this communication to federal and state authorities as evidence of the routine
rude and disrespectful treatment I encounter regularly by people like Debbie Oliver.
March 31, 2015

Page - 2
Unfortunately parents of the afflicted are some of the worst offenders. The problem is
compounded exponentially when they are in positions of authority in AmeriFace and
other groups purporting to serve the cleft/craniofacial community.
In fact they only serve the parent agenda within the cleft/craniofacial community.
Attached is a paper published by the Cleft Palate-Craniofacial Journal, July 2011, Vol. 48 No. 4,
Impact of a Cleft Lip and/or Palate on Maternal Stress and Attachment Representations that
explains the parent phenomenon to some extent. Also attached is an abstract of the paper.
There are two separate cleft/craniofacial communities. AmeriFace and Cleft Advocate is a
community of parents of children born with facial birth defects. There is some crossover with
parents of children who acquire facial disfigurement through illness or accidents. Parent groups
may minimize the consequence of facial birth defects as an ego defense, and as a coping
mechanism regarding their children with facial disfigurement.
Adult survivors of facial birth defects are a reminder to some parents of the limitations of
craniofacial surgery to create normalcy from what is missing or deformed. Bigotry and prejudice
of certain parents toward afflicted adults may fall along the same lines as racial hatred, and
discrimination based on social class, ethnicity, religion, disability and sexual orientation.
Adults with craniofacial disorders are largely on their own, with two caveats. Adults have secret
or restricted online groups, generally limited to offering emotional support.
Afflicted adults may benefit from national organizations, the American Cleft Palate-Craniofacial
Association (ACPA), and the National Foundation of Facial Reconstruction (NFFR), myFace.
Provide for AmeriFace the Return of Organization Exempt from Income Tax for 2013 and 2014.
I reiterate my request for the identity of the attorney who contacted AmeriFace. I would benefit
from legal assistance, and welcome counsel with an interest in craniofacial disorders. Thank you.
Sincerely,
8092 SW 115th Loop

Ocala, Florida 34481
Telephone: (352) 854-7807
Email: neilgillespie@mfi.net
Attachments
AmeriFace - Cleft/Craniofacial Advocates

AmeriFace is a 501(c)(3) tax-exempt public charity (#32-0085490)
Board of Directors - March 31, 2015

President - David Reisberg, DDS, Director University of Illinois Craniofacial Center, IL
Email: dreisber@uic.edu
Vice President - Christina Corsiglia, Attorney/Parent of a child with a facial difference, IL
Email: Bad address. ccorsiglia@winston.com. Update: Voluntarily inactive, not
authorized to practice law. Attorney Registration and Disciplinary Commission (ARDC),
Supreme Court of Illinois. http://www.iardc.org/
Secretary/Treasurer - Teresa Grillo, Social Worker/Adult born with a facial difference, IL
Email: Update: Bad address. piel_canela@comcast.net
Todd M. Beutler, Attorney, Hong Kong
Email: Update: todd.beutler@dlapiper.com beutlert@cl-law.com
Erik Kabik, Celebrity & Architectural Photographer, NV
Email: erik@erikkabik.com
Ben Kjar, NCAA All-American Wrestler/Adult born with a facial difference, UT
Email: Update: benkjar@yahoo.com
Gerry Gedroic Lichterman, Business Owner/Adult with an acquired facial difference, IL
Email: gerry@kenardchicago.com
Kerry Callahan Mandulak, PhD, CCC-SLP Asst. Professor, Speech/Language
Pathologist, OR
Email: Update: mandulak@pacificu.edu mandulak@pdx.edu
Corey Wyman, Business Owner/Parent of an adult child born with a craniofacial
condition, NV. Update: Chapter 7 Bankruptcy September 3, 2012
Email: http://vegasinc.com/business/public-record/2012/sep/03/records-and-transactions-sept-3-2012/
Executive Director
Debbie Oliver, Parent of an adult child born with a facial difference, NV
Email: debbie@ameriface.org
Program Director
Robin Remele, Parent of a child born with a facial difference, IL
Email: robinremele@sbcglobal.net
Action Team Coordinator
Joyce Bentz, Parent of a child born with a facial difference, IN
Email: jbentz6300@msn.com
http://www.ameriface.org/bod.html
the
cleft/craniofacial
advocates
Making a world of difference in a world of facial differences...
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cleftAdvocate?
Board of Directors
President - David Reisberg, DDS, Director, University of Illinois Craniofacial Center, IL
Kerry Callahan Mandulak, PhD, CCC-SLP, Asst. Professor, Speech/Language Pathologist, OR
Corey Wyman, Business Owner/Parent of an adult child born with a craniofacial condition, NV
Executive Director
Program Director
ameriface, PO Box 751112, Las Vegas, NV 89136-1112

Toll-free: (888) 486-1209 Fax: (702) 341-5351 info@ameriface.org
Disclaimer
Privacy Policy

President - David Reisberg, DDS
Vice President - Christina Corsiglia, Esq.
Secretary/Treasurer - Teresa Grillo
Todd M. Beutler, Esq.
Erik Kabik, Photographer
Gerry Gedroic Lichterman, Business Owner
Kerry Callahan Mandulak, PhD, CCC-SLP
AmeriFace Ex-Officio
Cleft Advocate, AmeriFace program
Robin Remele, Program Director
Joyce Bentz, Action Team Leader
-------------------------------------Corey Wyman, AmeriFace Board
Ben Kjar, AmeriFace Board
March 24, 2015

RE: Attorney who purportedly contacted AmeriFace; Facebook post by
Debbie Oliver, Executive Director, Cleft Advocate, AmeriFace program
Dear Ladies and Gentleman,
This is a request for the identity of an attorney who purportedly contacted AmeriFace.
Debbie Oliver posted on Facebook March 13, 2015 at 12:00 PM For more than five
years, our organization has been contacted by attorneys.... The posts text is attached.
I responded to the post March 14, 2014 at 11:27 PM, Debbie, who is the attorney, and
on what group's board of directors does he sit? BTW, here is a link to my beta version
cleft website, http://www.nosue.org/facematters-org/
Ms. Oliver did not respond to my message, so I sent her an email March 16, 2015 at 9:37
PM; still no response. Then I posted the message on the AmeriFace Facebook page,
which she deleted, claiming it was her personal page. However page shows AmeriFace
in the URL, and is a referrer to the Canyon Ridge Christian Church. See attached.
Apparently Ms. Oliver does not like my FaceMatters.org website. I welcome the
AmeriFace Board of Directors to view FaceMatters.org and provide comments.
The URL for FaceMatters.org is http://www.nosue.org/facematters-org/
Ms. Oliver finally responded March 17 at 9:23pm, in part,
Regarding the name of the attorney and the organization he is aligned with, I will
leave that up to your investigative skills. There are relatively very few actual nonprofit organizations serving the cleft/craniofacial community, so it should be
pretty easy to discern just by clicking around a bit. I am much too dedicated to
serving patients and families to become involved further...don't want to waste any
more time on it. Me calling them out in a public forum will serve no purpose in
advancing our mission...
Previously Ms. Oliver and I were friends on Facebook but today I unfriended her. You
may contact me as provided below. Thank you.
Sincerely,
8092 SW 115th Loop, Ocala, Florida 34481
Telephone: (352) 854-7807, Email: neilgillespie@mfi.net
AmeriFace - Cleft/Craniofacial Advocates

AmeriFace is a 501(c)(3) tax-exempt public charity (#32-0085490)
Board of Directors
President - David Reisberg, DDS, Director University of Illinois Craniofacial Center, IL
Email: dreisber@uic.edu
Email: ccorsiglia@winston.com
Email: piel_canela@comcast.net
Email: beutlert@cl-law.com
Email: erik@erikkabik.com
Email: non listed/linked
Email: gerry@kenardchicago.com
Kerry Callahan Mandulak, PhD, CCC-SLP Asst. Professor, Speech/Language
Pathologist, OR
Email: mandulak@pdx.edu
Corey Wyman, Business Owner/Parent of an adult child born with a craniofacial
condition, NV
Email: non listed/linked
Executive Director
Email: debbie@ameriface.org
Program Director
Email: robinremele@sbcglobal.net
Email: jbentz6300@msn.com
AmeriFace message appearing on the personal page of Debbie Oliver that is actually AmeriFace
https://www.facebook.com/AmeriFace?fref=nf
Page information: referrer Canyon Ridge Christian Church
https://www.facebook.com/canyonridge/info?tab=overview
https://www.facebook.com/AmeriFace?fref=nf&pnref=story
Debbie Oliver
March 13 at 12:00pm Las Vegas, NV
For more than five years, our organization has been contacted by attorneys (and marketing firms
hired to represent attorney firms) regarding "sharing important information" with our members
about potential causes of cleft lip/palate. I'm sure you have all see the posts and advertisements
here on Facebook, and/or the television ads when you're trying to relax in the evening. We have
continued to turn down any offer of advertising revenue, partnership, financial support
(donations and sponsorships), etc., and this morning was no different. I received yet another
request to link to an attorney firm page.
He writes, "Our aim is to reach as many people as possible who are seeking information relating
to craniofacial conditions and provide education and quick access to further information on the
topic."
Really? You are actually looking for clients. And you will not use our database of beautiful
families to do it. Period.
My response:
XXXX, thank you for your correspondence.
While we appreciate your willingness to share this information with the patients and families of
AmeriFace, the largest and most active support organization for the cleft/craniofacial
community, our organization is not partnering with or linking to any law firm or individual
attorney seeking to represent or who is presently representing patients and families in these sorts
of cases.
We are quite sure our core values and program outlines would meet your high expectations;
however, it is our policy to provide information on these issues to patients and families as
requested, and not become involved with any particular attorney or firm. This keeps our
activities in line with our Code of Ethics (http://www.ameriface.org/coe.html), allowing us to
avoid and prevent any actual, potential or perceived conflicts of interest.
AmeriFace represents the wide variety of conditions outlined on the link you provided, and is, in
fact, the parent organization for the Crouzon, Goldenhar and Treacher Collins support networks,
as well as the nationally-recognized and award-winning cleftAdvocate organization and the

Pathfinder Outreach Network. I am interested to know if my colleagues at the organizations you
mentioned are aware you are linking to their websites.
Thank you for your interest in AmeriFace and the cleftAdvocate program.
Making a world of difference in a world of facial differences
AmeriFace - Code of Ethics link/advertisement
http://www.ameriface.org/coe.html
You and 14 others like this.
Post March 13 at 12:15pm: John Davis

That's a really long and polite way of saying, "Buzz off, you vultures!" Well done!
Post March 13 at 12:19pm: Debbie Oliver

And now - I just did a little more digging to find our who is behind the link and website this
person sent me - the inquiry this morning came from a law firm run by an attorney ****who sits
on the board of directors of a so-called cleft support organization!!**** Are you kidding me?
This is NOT right. I am just about beside myself right now...this is a law firm we turned down
years ago, one that found an opening somewhere else in the cleft community - and now that
person is on the legal website endorsing the attorney, saying he has been "fundamentally helpful
in the growth of our organization." Folks, when you need support, stick with the premier support
organization for the cleft/craniofacial community! Invite your friends and acquaintances to join
us at http://www.facebook.com/groups/cleftadvocate, where there is no underlying agenda! Join
us in making a world of difference in a world of facial differences!
CleftAdvocate link/advertisement
March 13 at 12:19pm
Closed Group
1,422 Members
+ Join Group
Neil Gillespie Debbie, who is the attorney, and on what group's board of directors does he
sit? BTW, here is a link to my beta version cleft website, http://www.nosue.org/facematters-org/
March 14 at 11:27pm
Page 1 of 1
Neil Gillespie
From:
To:
Cc:
Sent:
Attach:
Subject:
"Neil Gillespie" <neilgillespie@mfi.net>

"Debbie Oliver" <debbie@cleftadvocate.org>
Monday, March 16, 2015 9:37 PM
Obituary Brooksie Bergen helped others with facial disorders.pdf
your Facebook post March 13, 2015 @12.00PM about being contacted by attorneys

cleftAdvocate a program of AmeriFace
debbie@cleftadvocate.org
Hi Debbie,
I read your Facebook post March 13, 2015 @12.00PM about being contacted by attorneys,
"For more than five years, our organization has been contacted by attorneys (and marketing firms hired to
represent attorney firms) regarding "sharing important information" with our members about potential
causes of cleft lip/palate. I'm sure you have all see the posts and advertisements here on Facebook, and/or
the television ads when you're trying to relax in the evening. We have continued to turn down any offer of
advertising revenue, partnership, financial support (donations and sponsorships), etc., and this morning
was no different. I received yet another request to link to an attorney firm page."
I replied to your posted but maybe you did not get my message: Debbie, who is the attorney, and on what
group's board of directors does he sit?
By the way, "FACE of Sarasota, Inc., brooksie@acun.com" may need updating on your Florida page.
Unfortunately Brooksie Bergen died in 2007, see attached.
Recently I added a webpage to my Justice Network website called FaceMatters.org with information about
congenital craniofacial disorders.
The URL for the webpage is http://www.nosue.org/facematters-org/
I invite you to view the webpage at your convenience. If you are inclined, I would appreciate your critique
of the webpage, which is a beta version. I value your opinion.
I also uploaded a personal Photo Journal, Habilitation of Congenital Craniofacial Disorder on Scribd http://www.scribd.com/doc/258448502/Photo-Journal
Also see my letter to the United Nations about Zinnah Begum, Bangladesh. (no response from the UN)
http://www.scribd.com/doc/227459746/Letter-to-United-Nations-May-18-2014-Gillespie
You may contact me anytime as provided below. Thank you.
Sincerely,
Neil J. Gillespie
8092 SW 115th Loop
Ocala, Florida 34481
Telephone: (352) 854-7807
email: neilgillespie@mfi.net
3/17/2015
http://www.heraldtribune.com/article/20070726/NEWS/707260435?template=printpicart
This copy is for your personal, noncommercial use only. You can order presentation-ready copies for
distribution to your colleagues, clients or customers here or use the "Reprints" tool that appears above
any article. Order a reprint of this article now.
Printed on page A1
OBITUARY
Bergen helped others with facial disorders

By MARK ZALOUDEK
Published: Thursday, July 26, 2007 at 3:48 a.m.
SARASOTA -- Brooksie Bergen refused to let a facial defect from birth hold her
back.
Teased and self-conscious as a child for her bilateral cleft lip and the several
surgeries she underwent to correct it, Bergen pursued acting in high school as a way
to escape reality. She went on to appear in stage productions in the Northeast and in
community theater in Sarasota.
She also founded a Southwest Florida support group to help other families deal with
a wide range of congenital facial deformities. Her Friends for Aid, Correction and
Education of cranio-facial disorders, or FACE, received the Herald-Tribune's top
award for community service in 1985, just six years after it began.
One of Bergen's proudest moments was winning the Ms. National Senior Citizen title
in 1995 at the age of 71.
"As far as I know, I am the first woman with a facial birth defect to win a national
beauty title..." she later wrote of the experience. "My victory was a chance to assure
others with similar birth defects that they could achieve any goal they set for
themselves."
Bergen, 83, a former freelance columnist for the Herald-Tribune and other local
publications, died Tuesday from a cerebral hemorrhage after a recent fall.
"She was an amazing person," said longtime friend Bette Lou Cookson, vice
president of FACE. "She loved life, loved to sing and dance, loved children and was
upset when people weren't accepting of other people who were different for one
reason or another."
In addition to providing information to the families of newborns with a cleft lip, port
wine stain or other facial deformity, FACE aims to promote acceptance of people's
differences. Its puppet show "Face to Face" teaches elementary schoolchildren about
tolerance of others who were not "standard issue," in Bergen's words.
Born Jan. 10, 1924, in Brooklyn, Bernice "Brooksie" Brooks had two operations with
moderate success before her first birthday to correct her upper lip. Her looks
improved with a third operation by the age of 12 and plastic surgery before she
entered college.
After that, Bergen relied on makeup to hide a mouth that she described as "a little
different."
High school drama productions helped her overcome her insecurities and transform
her appearance. She was named the best actress in her class at Bogota High School
in New Jersey.
She studied art and drama at Syracuse University and received a degree in fine arts.
http://www.heraldtribune.com/article/20070726/NEWS/707260435?template=printpicart
An accomplished artist, she later studied at the Art Students League in New York
City and taught art at Oklahoma State and at art schools in New York and New
Jersey.
An Equity actress, she also appeared in numerous stage productions primarily in
and around New Jersey before moving to Sarasota in the mid-1960s, where she
continued her work on stage.
"She was vivacious, she was a lot of fun to be around, she had incredible drive and
she loved being a leading lady," said Peter Strader, a former artistic director at The
Players Theatre.
Bergen had visited Southwest Florida many times since the late 1930s, said her son,
Dan Callahan of Downers Grove, Ill. Her parents owned a home overlooking
Sarasota Bay.
She later wrote about Southwest Florida's history through the wide-ranging
experiences of some of its residents. Her columns in the Sarasota Times and the
Herald-Tribune became the basis for her 1993 book, "Sarasota Times Past: A
Reflective Collection of the Florida Gulf Coast."
Although many people she dealt with in recent years were no longer conscious of her
physical imperfection, Bergen had more difficulty shedding its emotional scars, her
son said.
"Everything in her life was anchored around that imperfection. That was the
impetus that drove her," he said.
In addition to her son, Bergen is survived by three grandchildren.
A memorial service will be 2 p.m. Monday at First Presbyterian Church in Sarasota.
Memorial donations may be made to FACE, P.O. Box 1424, Sarasota, FL 34230.
This story appeared in print on page A1
Copyright 2015 HeraldTribune.com All rights reserved. Restricted use only.
Page 1 of 1
Neil Gillespie
From:
To:
Sent:
Subject:
"Facebook" <notification+hpjwikvi@facebookmail.com>
Tuesday, March 17, 2015 9:23 PM
Debbie Oliver mentioned you on Facebook
facebook
Debbie Oliver mentioned you in a comment.
Debbie wrote: "Neil Gillespie, I removed your post here as it didn't pertain to the thread; however, I
posted to your page...thanks!"
Reply to this email to comment on this status.
See Comment
This message was sent to neilgillespie@mfi.net. If you don't want to receive these emails from Facebook in the future,
please unsubscribe.
Facebook, Inc., Attention: Department 415, PO Box 10005, Palo Alto, CA 94303
3/17/2015
https://www.facebook.com/neil.gillespie.186/posts/10204890343992754?notif_t=wall
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Neil, thank you for your post to my personal page; I removed it from the
thread you commented on because it was an entirely different subject and
didn't pertain to the thread. Regarding the name of the attorney and the
organization he is aligned with, I will leave that up to your investigative
skills. There are relatively very few actual non-profit organizations serving
the cleft/craniofacial community, so it should be pretty easy to discern just
by clicking around a bit. I am much too dedicated to serving patients and
families to become involved further...don't want to waste any more time on
it. Me calling them out in a public forum will serve no purpose in advancing
our mission, so I will concentrate on the work at hand. I'm sure you
understand. Thanks!
Pro
lifel
Life
Pro
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Making a world of difference in a world of facial differences...
ShareThis
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Code of Ethics
AmeriFace and all associated programs, its Committee Members, Employees, Pathfinders and all Volunteers shall adhere to
the following Code of Ethics:
Our Mission and Programs
We will ensure that programs diligently, effectively and efficiently work toward achieving our mission.
We will appropriately evaluate programs and projects on an ongoing basis to ensure efficiency and effectiveness.
We will establish and carry out our programs and services with the utmost professionalism and respect for every person served.
We will aspire to make our programs and services available to everyone who can benefit.
Our Integrity
We will act with consistency, openness, and honesty in all that we do.
We will act in such a way as to engender the public's trust.
We will act in the best interest of the organization rather than ourselves and/or other individuals.
We will avoid and prevent any actual, potential or perceived conflicts of interest.
We will insure that all services, recognition and other transactions promised, in consideration of a gift or transaction, will be fulfilled
in a timely manner.
Financial and Legal
We will be faithful stewards of the resources entrusted to us.
We will keep fundraising and administrative expenses at the lowest possible percentage of receipts, and will spend the maximum
amount of available resources for the purposes for which they were given.
We will provide sound and timely financial management in compliance with all legal and regulatory requirements.
Fundraising
We will
We will
We will
We will
ensure that our fundraising practices are consistent with our mission.
ensure our fundraising programs reflect a foundation of truthfulness and responsible stewardship.
seek to inspire trust in every transaction.
honor the intentions of our donors and the confidential nature of the relationship.
Public Policy
We will clearly and specifically display and describe the organization's identity on the organization's website.
We will provide the public with relevant information about our mission, program activities and finances, while maintaining
appropriate confidentiality.
We will protect the interests and privacy of individuals interacting with our website and our on-line support network.
We will refrain from partisan political activity when acting on behalf of the organization.
ameriface, PO Box 751112, Las Vegas, NV 89136-1112
Toll-free: (888) 486-1209 Fax: (702) 341-5351 info@ameriface.org
Disclaimer
Privacy Policy
Impact of a Cleft Lip and/or Palate on Maternal Stress and

Attachment Representations
Josee Despars, Ph.D., Camille Peter, Ayala Borghini, Ph.D., Blaise Pierrehumbert, Ph.D., Stephanie Habersaat,
Carole Muller-Nix, M.D., Francois Ansermet, M.D., Judith Hohlfeld, M.D.
Objective: The announcement, prenatally or at birth, of a cleft lip and/or
palate represents a challenge for the parents. The purpose of this study is to
identify parental working internal models of the child (parental representations
of the child and relationship in the context of attachment theory) and
posttraumatic stress disorder symptoms in mothers of infants born with a cleft.
Method: The study compares mothers with a child born with a cleft (n = 22)
and mothers with a healthy infant (n = 36).
Results: The study shows that mothers of infants with a cleft more often
experience insecure parental working internal models of the child and more
posttraumatic stress symptoms than mothers of the control group. It is
interesting that the severity or complexity of the cleft is not related to parental
representations and posttraumatic stress disorder symptoms. The maternal
emotional involvement, as expressed in maternal attachment representations,
is higher in mothers of children with a cleft who had especially high
posttraumatic stress disorder symptoms, as compared with mothers of
children with a cleft having fewer posttraumatic stress disorder symptoms.
Discussion: Mothers of children with a cleft may benefit from supportive
therapy regarding parent-child attachment, even when they express low
posttraumatic stress disorder symptoms.
KEY WORDS:
cleft, maternal representations, posttraumatic stress symptoms
Concerns about the well-being of infants born with a

cleft lip and/or palate has stimulated research in various
fields (Hunt et al., 2006). The incidence of behavioral and
social problems in infants and children born with clefts
suggests that these children are at risk for social-interactive
difficulties (Collett and Speltz, 2006), as well as for

difficulties with communication and cognitive competencies
(Field and Vega-Lahr, 1984). Considering that the family
provides the foundation of a childs psychological and
social development, the well-being of the mother may
represent an important protective factor regarding the
childs development. Parents naturally expect a perfect
baby without problems. Therefore, the detection of a cleft
during pregnancy (or at birth) and the presence of a visible
disfigurement may complicate the transition to parenthood
and the encounter with the infant. Parents can experience a
shock and have to adjust to the loss of the anticipated
perfect child; they are likely to experience emotional
reactions such as confusion, denial, distress, and guilt
(Bradbury and Hewison, 1994), as well as feelings of loss of
control, helplessness, and even depression (Seligman, 1975;
Wong and Weiner, 1981). Parents may feel damaged by
their perceived incapacity to produce a healthy and
typically formed child who is free of physical defects
(Dolger-Hafner et al., 1997; Schlenker et al., 1998a;
Schlenker et al., 1998b). In spite of the fact that the babys
cleft can be repaired, the early parent-infant relationship
may begin under stressful circumstances.
Several studies indicate that the interaction style between
parents and children with a cleft lip and/or palate, as
compared with control dyads, differs significantly (Field
and Vega-Lahr, 1984; Wasserman et al., 1985; Wasserman
Dr. Despars and Dr. Peter are Psychologists, Pediatric Psychiatry

Consultation-Liaison Service, Department of Child and Adolescent
Psychiatry, University Hospital Lausanne, Switzerland. Dr. Borghini is
Psychologist, Dr. Pierrehumbert is Psychologist and Chief, and Dr.
Habersaat is Psychologist, Research Unit Service, Department of Child
and Adolescent Psychiatry, University Hospital Lausanne, Switzerland.
Dr. Muller-Nix is Head of Pediatric Psychiatry Consultation-Liaison
Service, Department of Child and Adolescent Psychiatry, University
Hospital Lausanne, Switzerland. Dr. Ansermet is Head of Child and
Adolescence Psychiatry Service (SPEA), University Hospital of Geneva,
Geneva, Switzerland. Dr. Hohlfeld is Head of Department of Pediatric
Surgery (DMCP), University Hospital Lausanne, Switzerland.
This study is supported by private grants (The Fondation Rothschild
and the Fondation pour la Psychiatrie de la Petite Enfance) and is the
result of collaboration between Pediatric Psychiatry Consultation-Liaison
Service, Department of Child and Adolescent Psychiatry and the
Department of Pediatric Surgery (DMCP), University Hospital Lausanne,
Swtzerland.
Submitted September 2008; Accepted October 2009.
Address correspondence to: Dr. Jose e Despars, Ph.D., Pediatric
Psychiatry Consultation-Liaison Service, Department of Child and Adolescent Psychiatry, University Hospital Lausanne, Switzerland, Avenue Pierre
Decker 5, 1011, Lausanne, Switzerland. E-mail Josee.Despars@chuv.ch.
DOI: 10.1597/08-190
419
420
Cleft PalateCraniofacial Journal, July 2011, Vol. 48 No. 4
et al., 1988; Barden et al., 1989; Koomen and Hoeksma,

1992; Speltz et al., 1994; Langlois et al., 1995).
Attachment theory represents a framework for studying
the quality of the parent-child relationship. Concerning
clefts, the literature shows contrasting results. Some
authors have found that the birth of a child with a cleft
lip and/or palate does not affect the quality of the childs
attachment to his or her mother as measured with
Ainsworths Strange Situation paradigm (Ainsworth et
al., 1978) at 12 months (Hoeksma et al., 1996; Endriga and
Speltz, 1997; Speltz et al., 1997). Another study (Coy et al.,
2002), however, describes a greater prevalence of secure
attachment for children with a cleft lip and/or palate. This
last, counterintuitive result may reflect the possibility that
the parents can perceive the child as more vulnerable and
needing protection; attachment behaviors from the parent
to the infant and from the infant to the parent may then be
reinforced. However, these studies remain inconclusive. It
may be important to take into account the parents stress
and its impact on their representations. The presence of a
cleft is a potentially traumatic circumstance (shock at the
announcement, grief at not having the perfect child).
Parental reactions and sensitivity to a baby with a cleft
also depends on how the malformation echoes in the
parents personal history.
The aim of the present study is to examine whether
mothers attachment representations (parental working
internal models; Zeanah and Benoit, 1995)1 are different
and if maternal posttraumatic stress symptoms are more
likely when the child has a cleft. Taking into consideration
the complexity of the cleft, we first hypothesized that
mothers of infants with a cleft would have different
attachment representations than mothers of children
without a cleft. Our second hypothesis was that mothers
of infants with a cleft would report more posttraumatic
stress disorder (PTSD) symptoms than mothers of babies
without a cleft. Our third hypothesis was that the
complexity of the cleft would influence these representations, and more complex clefts would cause more maternal
PTSD symptoms. Finally, mothers of infants with a cleft
with a high level of stress were expected to have more
altered representations.
METHOD
Participants
Clinical Sample
During a 4-year period (2004 to 2008), all infants born
with a cleft and followed at the Lausanne University
1
Parental working internal models are parental representations about the

child and the relationship; in other words, perceptions and subjective
experiences of the infant within the context of attachment theory.
TABLE 1
Demographic Data*
Gender (male)
Birth rank (1st)
Cleft lip and alveolus
Cleft lip, palate and
alveolus
Mothers age, y
Fathers age, y
Socioeconomic status
(range, 14)
Cleft Group (n 5 22)
Control Group (n 5 36)
17 (77)
8 (36)
10 (45)
15 (42)
14 (39)
0 (0)
12 (55)
31.1 (3.8)
33.2 (4.6)
0 (0)
32.6 (4.51)
35.0 (5.22)
2.7 (0.6)
2.82 (0.69)
* Values represent n (%) for gender, birth rank, and cleft and mean (standard deviation)
for other variables.
Hospital (CHUV) were considered for inclusion in the

study. Exclusion criteria were associated genetic syndromes, nonvisibility of the cleft (palate cleft only),
parental psychiatric illness and/or drug abuse, and difficulty speaking French. After these exclusions, 22 families met
the criteria for inclusion in the study analyses. All families
in the cleft group agreed to participate, and there were no
dropouts.
Control Sample
Control subjects were recruited at the maternity ward of
the same hospital. Exclusion criteria were difficulties during
pregnancy or delivery, somatic abnormalities other than a
cleft, psychiatric problems in the parents, and difficulty
speaking French. In the control group, 110 mothers were
contacted, and 42 (38%) agreed to participate. The dropout
rate between 0 and 12 months was 14% (six mothers). After
exclusions, 36 control families were included in the study.
The sample characteristics are presented in Table 1. There
were no significant differences between the two groups for
birth rank, mothers age, fathers age, and socioeconomic
status.
Of the clinical subjects, 45% were diagnosed with cleft lip
and alveolus (n 5 10) and 55% with cleft lip, palate, and
alveolus (n 5 12). Subjects with cleft lip and alveolus were
considered as having simple abnormalities (CL6A), and
babies with cleft lip, palate, and alveolus (CLP) were
characterized as having complex abnormalities.
From a theoretical point of view, one would think that a
bilateral cleft is more complex. However, consultation with
the pediatric surgical team at the CHUV suggested that in
reality a unilateral cleft arouses as much or possibly more
concern than a bilateral cleft among parents and children,
given the asymmetry of the face. Therefore, we combined
unilateral and bilateral clefts in the same clinical group for
this study.
Measures
The Working Model of the Child Interview (WMCI;
Zeanah and Benoit, 1995) was developed in reference to the
Adult Attachment Interview (AAI; Main et al., 1985). The
Despars et al., CLEFTS IMPACT ON MATERNAL STRESS AND REPRESENTATIONS
TABLE 2
421
Categories of Maternal Attachment Representations, According to Groups*
Maternal balanced representations

Maternal disengaged representations
Maternal distorted representations
Control Group
(n 5 36), n (%)
Cleft Group
(n 5 22), n (%)
x2 (df 5 1)
p Value
21 (58)
5 (14)
10 (28)
7 (32)
8 (36)
7 (32)
3.84
3.97
0.11
.05
.05
NS
* Global chi-square (df 5 2) 5 5.14, p , .07. Separate chi-squares are computed for each characteristic against all others. NS 5 nonsignificant.
WMCI is a 1-hour, semistructured interview for classifying

a mothers perceptions of her infants individual characteristics, her subjective experiences and her own relationship with her child. The WMCI focuses on the mothers
emotional reactions during pregnancy, on the perception of
the infants personality and development, on the characteristics of the relationship with the infant, on the reactions
to the infants behavior and distress, and on anticipated
difficulties in later development. The mother was asked to
provide specific examples to illustrate her infants personality and behavior. Responses were video recorded and
were transcribed. The quality of the mothers representations was classified into a three-category system; representations were defined as balanced, disengaged, or distorted,
reflecting Main and colleagues (1985) attachment classification. Balanced (secure) representations (Zeanah and
Benoit, 1995) express an emotional involvement in the
relationship, with a sensitivity to the infants signals, an
acceptance of his/her own needs, a coherence between
cognitions and emotions, a flexibility of representations,
and an accommodation to change and to challenges.
Disengaged (insecure) representations express an emotional
distance from the infant, intellectual descriptions devoid of
emotions, a lack of flexibility in accommodating to change,
and a poverty of details about the infant or about the
parenting experience. Distorted (insecure) representations
express an important emotional immersion during the
interview concerning the child; however, the parent seems
not fully involved in the relationship, and the infants needs
are generally not more accepted than in the case of
disengaged representations. The caregiver may seem
preoccupied or distracted by other concerns, confused,
and anxiously overwhelmed by the infant.
Clinically there is no link between psychopathology and
categories of the WMCI. However, it has been hypothesized that the secure attachment category may be a
protective factor concerning the development of the
parent-child relationship. Mothers WMCI attachment
classifications have been showed to correlate with those
obtained by their children in the Strange Situation
paradigm (Benoit et al., 1997).
The WMCI interview took place at the research center
when the children were 2 months old. Interviews were
coded by two coders, one of whom had been trained by
Mary Main and Erik Hesse on the AAI system. Agreement
was 73% (k 5 .58). Interrater reliability was computed
considering the three-way classification (balanced, disengaged and distorted). Intercoder differences were resolved
by discussion, and the consensus classification was used for

data analysis.
The Impact of Event Scale (IES; Horowitz et al., 1979)
was developed to measure the current subjective distress
related to a specific event. Its purpose is to reflect the
intensity of posttraumatic symptoms (McGuire, 1990).
Horowitz observed that the most commonly reported
responses to traumatic stressors relate either to intrusion
or avoidance (Horowitz et al., 1979; Weiss and Marmar,
1997). This 15-item questionnaire evaluates the experiences
of avoidance and intrusion; seven items relate to intrusive
symptoms (intrusive thoughts, nightmares, intrusive feelings, and imagery) and eight to avoidance symptoms
(numbing of responsiveness, avoidance of feelings, situations, ideas). The IES items are presented regarding a
specific stressor (Horowitz et al., 1979; Briere, 1997), in the
present case the infants malformation. The parents were
asked to rate retrospectively the items on a 4-point scale
according to how often each symptom had occurred (not at
all, rarely, sometimes, often). Mothers were asked to
evaluate the occurrence of symptoms during the first
3 months following the birth. The resulting score represents
the total of positive responses regarding PTSD symptoms.
A cut point (median) was used in order to separate lowstressed (score , 9) and high-stressed (score $ 9) parents.
Procedure
The study took place during the first year after the
infants birth. A first evaluation was conducted at 2 months
(mothers attachment representations) and a second evaluation at 12 months (maternal posttraumatic stress
symptoms). All the families signed a consent form before
their participation. The study was approved by the ethical
committee for clinical studies of the CHUV. Subjects of the
cleft group were recruited directly by the pediatric surgery
team after the announcement of the cleft during the
pregnancy or after birth. Control subjects were recruited
by the obstetric team during the 3- to 4-day maternity stay
of mothers with their newborns.
RESULTS
Table 2 presents the proportions of the three-way WMCI
classification of maternal attachment representations as
balanced (secure), disengaged (insecure), and distorted
(insecure) in the control and study groups.
422
TABLE 3 Posttraumatic Stress Symptoms According to

Cleft Type*
Control Group
(n 5 36),
mean (SD)
CL6A{
(n 5 10),
mean (SD)
CLP
(n 5 12),
mean (SD)
p Value
8.15 (5.36)
12.30 (11.73)
13.50 (9.73)
2.54
.09
* Analysis of variance control versus cleft groups together: F 5 5.032, p 5 .03.

{ CL6A 5 cleft lip and alveolus; CLP 5 cleft lip, palate, and alveolus.
Mothers of infants with a cleft lip and/or palate

presented significantly fewer balanced and more disengaged
attachment representations than did mothers of healthy
infants.
The cleft complexity did not significantly influence the
quality of mothers representations.
Mothers of infants with a cleft showed significantly more
posttraumatic stress symptoms than control group mothers
did (12.95 6 10.44 for the cleft group; 8.15 6 5.36 for the
control group; analysis of variance [ANOVA], F 5 5.032,
p 5 .03). Table 3 presents the mean indexes of posttraumatic stress symptoms, according to cleft type. The
complexity of the cleft (CL6A, CLP) did not significantly
influence maternal stress (ANOVA, F 5 2.54, p 5 .09).
Table 4 presents the categories of maternal attachment
representations according to maternal PTSD symptoms. It
is interesting that mothers of cleft lip and/or palate children
who showed a relatively low level of PTSD symptoms, were
more frequently categorized as disengaged, as compared
with mothers of the control group and with mothers of cleft
lip and/or palate children with a relatively high level of
PTSD symptoms. Conversely, mothers of children with a
cleft who experienced a relatively high PTSD symptoms
had attachment representations showing an important
emotional involvement (either balanced or distorted).
DISCUSSION
The first purpose of the study was to identify possible
specificities of maternal attachment representations regarding infants born with a cleft. Mothers of children with a
cleft presented fewer balanced representations than mothers of the control group did. In other words, the
representations of mothers of the control group were more
richly detailed and coherent and expressed a capacity to
adapt to the baby, as compared with the cleft group.
Regarding the type of insecurity (disengaged or distorted) it
TABLE 4
appears that mothers of children with a cleft presented

more disengaged attachment representations than did
mothers of the control group. Viaux-Salevon et al. (2007)
described that the announcement of a suspected malformation can cause a shock, and maternal emotional
investment seems to stop. According to these authors,
there is a risk that a visible disfigurement like a cleft and
insecure representations may disturb the process of
parenthood. Several studies showed that interaction
between the mother and the child born with a cleft is
affected. For example, the literature indicates that mothers
of children with a malformation are less sensitive in the
interpretation of their childrens signals (Koomen and
Hoeksma, 1992). Observations in a play situation show that
mother-infant interactions are less active, responsive, and
playful, as compared with those of control dyads (Field and
Vega-Lahr, 1984; Wasserman et al., 1985; Wasserman et
al., 1988; Barden et al., 1989; Speltz et al., 1994). Speltz et
al. (1994) found that children born with a cleft spend less
time looking at their mothers, vocalizing, and smiling as
compared with healthy children.
In the general population, Langlois et al. (1995)
suggested that children perceived as attractive receive more
affectionate care from their parents than children perceived
as less attractive, who more often receive routine caregiving. Considering that babies can recognize adult emotional
states and respond to them (Cohn and Tronick, 1983;
Trevarthen, 1985), parental representations (even unconscious) can be expected to affect the dyadic functioning and
early interactions and thereby the childs further development.
Concerning the second type of insecure representations,
the frequency of distorted representations did not differ
between controls and the cleft group. One possible
explanation for this result is that the transition to
parenthood is a challenge for every parent (Bydlowsky,
1991). Then, parents may be overburdened for different
reasons (e.g., personal guilt concerning the cleft or personal
history).
The second purpose of the study was to identify possible
posttraumatic stress symptoms in mothers of infants born
with a cleft. Mothers in the cleft group reported more
posttraumatic stress symptoms than did mothers in the
control group. As defined by the IES questionnaire
(Horowitz et al., 1979), PTSD symptoms relate either to
intruding memories or to avoidant strategies. Bessis and
Maternal Attachment Representations Categories According to Maternal Stress*

Control Group
(n 5 36), n (%)
Cleft Group, Low Stress

(n 5 12), n (%)
Cleft Group, High Stress

(n 5 10), n (%)
x2 (df 5 2)
p Value
21 (58)
5 (14){
10 (28)
3 (25)
7 (58){{
2 (17)
4 (40)
1 (10){
5 (50)
4.34
11.29
3.03
NS
.01
NS
* Global chi-square (df 5 4) 5 13.10. NS 5 nonsignificant.

{ p , .01.
{ p , .05 for two by two comparison.
Despars et al., CLEFTS IMPACT ON MATERNAL STRESS AND REPRESENTATIONS
Gonties (1983) and Moriaux et al. (1990) also reported that

some parents may see only the abnormality of the child.
This could be illustrated by the following example of a
mother who experiences intrusive thoughts and images:
I thought of him as a cleft, I didnt see a beautiful baby. I
always imagined him with a cleft, yes when I thought of him
I couldnt see his face. I could see all the rest, but I could not
see his head.
The second aspect of PTSD is avoidant strategies, which

could be illustrated by this mother:
I tried to forget the baby, as if I didnt carry a baby in my
womb anymore. Suddenly I stopped talking. I always talked
to my baby. And then, slowly, I stopped. I think I was too
afraid that things would go wrong, so I just broke off. The
maternal affection just couldnt develop anymore. It causes a
certain distance.
Concerning the type of the cleft (CL6A or CLP), the

study showed that maternal representations and PTSD
symptoms were not significantly affected. Therefore,
insecure representations and PTSD symptoms did not
appear to be related to the severity of the cleft.
Endriga and Speltz (1997) showed, in mother-infant
(3 months old) face-to-face interactions, that mothers of
less-impaired infants (cleft palate only) are more distant
than mothers of more-impaired children (cleft lip and
palate). They hypothesized that the first mothers received
less professional attention and support than those of
infants with cleft lip and palate.
The most interesting result of the study is that there are
different maternal representations associated with the level
of PTSD symptoms. Mothers of the cleft group, who
experienced a high level of symptoms, were apparently
more emotionally immersed in the relationship with the
infant, which was expressed as a balanced (secure) or a
distorted (insecure) representation. Unexpectedly, we
found that mothers who had children with a cleft and
who experienced the fewest PTSD symptoms often had
more insecure representations, as compared with other
mothers. More precisely, they had significantly more
disengaged representations. This result is surprising and
probably could be understood as a correlation between the
two variables. In other words, it is possible to define a
hypothesis where mothers experience low stress because
they are disengaged or vice versa. This paradoxical result
could be explained by Bardens study (Barden et al., 1989),
which showed that mothers of children with a cleft lip and/
or palate have been found to rate their parental satisfaction
as higher than mothers of children without a cleft, even
though they behave in a less nurturing manner. This result
suggests that the infants facial malformation may affect
the mothers representation and the quality of the infantcaregiver interaction, with the parent being unaware of it.
Moreover, Shaw et al. (2006) mentioned that persons who
express stress avoidance symptoms might be particularly
unable to answer questions about avoidant symptoms.
423
Therefore, it may be that disengaged mothers failed to

report their actual symptoms, and consequently were
wrongly categorized as having low stress. Taken to the
extreme, it seems that very symptomatic avoidant people
also avoid participating in such research (Shaw et al., 2006).
The risk tied to avoidance symptoms revealed by HolditchDavis, is that the avoidant parents are less inclined to use
care facilities that would remind them too much of the
traumatic event (Holditch-Davis et al., 2003). This aloofness and lack of sensitivity could be understood as a
defense mechanism. For example, a mother with a child
having a malformation who showed disengaged representations and low PTSD symptoms, spoke as if nothing
special had happened to her baby:
Well, I wasnt shocked at all, because I was alone when I gave
birth and I didnt even pay any attention. I dont believe that it
changes anything. He was 15 days later than term, so I told
myself that he didnt want to show himself.
This explains how mothers can behave as if they do not

care about specific needs concerning the cleft, or more
generally concerning caregiving. The mothers explanations
concerning the discovery of the cleft outlines a poverty of
emotions, a distance, a denial and a rationalization
process (because I was alone). There is a cold emotional
tense: he didnt want to show himself. This coincided
with the definition given by Perry (unpublished manuscript,
1990): the individual deals with emotional conflicts, or
internal or external stressor, by devising reassuring or selfserving but incorrect explanations for his or her own
others behaviour (p. 21). Taking into account the risk
that these parents deny some of the difficulties with the
child, Holditch-Davis (2003) shows that it is especially
important to investigate, during in-depth interviews, the
avoidant symptoms tied to posttraumatic stress (Honig et
al., 1999). In our study, the evaluation of stress symptoms is
based on a questionnaire only. There may then be an
important limitation to these results. It would be important
in future studies to investigate parental stress with a
semistructured interview.
In conclusion, in spite of important limitations (such as
the size of the groups and type of measures used), the results
of the present study suggest that the birth of an infant with a
cleft could be a risk factor for atypical parental representations and an atypical parent-child relationship. Further
studies need to evaluate the consequences of a cleft on
parental representations, on parental defense mechanisms,
and on the mother-infant relationship. Even if the present
study highlights the importance of offering support to the
parents of infants born with a cleft who experience even mild
emotional stress reactions, further studies should investigate
the adequacy of such support. It could be difficult for some
of the parents to accept psychological help, especially when
they describe themselves as having low stress and are not
especially preoccupied with the infant. In a study concerning
suspicion of malformation, Viaux-Salevon et al. (2007)
424
recommended offering psychological support during pregnancy because at birth, parents are often too fragile to accept
professional support that they consider to be intrusive. The
intervention of health care professionals may help disengaged mothers to stay involved with their infants.
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1
1
Abstract
Objective: The announcement, prenatally or at birth, of a cleft lip and/or palate represents a
challenge for the parents. The purpose of this study is to identify parental working internal
models of the child (parental representations of the child and relationship in the context of
attachment theory) and posttraumatic stress disorder (PTSD) symptoms in mothers of infants
born with a cleft.
Method: The study compares mothers with a child born with a cleft (n=22) and mothers with
a healthy infant (n=36).
Results: The study shows that mothers of infants with a cleft more often experience insecure
10
parental working internal models of the child and more posttraumatic stress symptoms than
11
mothers of the control group. Interestingly, the severity or complexity of the cleft is not
12
related to parental representations and PTSD symptoms. The maternal emotional
13
involvement, as expressed in maternal attachment representations is higher in mothers of
14
children with a cleft who had especially high PTSD symptoms, as compared to mothers of
15
children with a cleft having fewer PTSD symptoms.
16
Discussion: Mothers of children with a cleft may benefit from supportive therapy regarding
17
parent child attachment, even when they express low PTSD symptoms.
18
19
20
21
22
23
24
25
26
KEY WORDS: cleft, posttraumatic stress symptoms, maternal representations.
2
27
Introduction
28
Concerns about the well-being of infants born with a cleft lip and /or palate has stimulated
29
research in various fields (Hunt et al., 2006). The incidence of behavioral and social problems
30
in infants and children born with clefts suggests that these children are at risk for social-
31
interactive difficulties (Collett and Speltz, 2006), as well as for difficulties with
32
communication and cognitive competencies (Field and Vega-Lahr, 1984). Considering that
33
the family provides the foundation of a childs psychological and social development, the
34
well-being of the mother may represent an important protective factor regarding the childs
35
development. Parents naturally expect a perfect baby without problems. Therefore, the
36
detection of a cleft during pregnancy, or at birth and the presence of a visible disfigurement
37
may complicate the transition to parenthood and the encounter with the infant. Parents can
38
experience a shock and have to adjust to the loss of the anticipated perfect child; they are
39
likely to experience emotional reactions such as confusion, denial, distress and guilt
40
(Bradbury and Hewison, 1994), as well as feelings of loss of control, helplessness and even
41
depression (Seligman, 1975; Wong and Weiner, 1981). Parents may feel damaged by their
42
perceived incapacity to produce a healthy and typically formed child who is free of physical
43
defects (Dolger-Hafner et al., 1997; Schlenker et al., 1998a; Schlenker et al., 1998b). In spite
44
of the fact that the babys cleft can be repaired, the early parent-infant relationship may begin
45
under stressful circumstances.
46
Several studies indicate that the interaction style between parents and children with a cleft lip
47
and/or palate, as compared to control dyads, differs significantly (Field and Vega-Lahr, 1984;
48
Wasserman et al., 1985; Wasserman et al., 1988; Barden et al., 1989; Koomen and Hoeksma,
49
1992; Speltz et al., 1994; Langlois et al.,1995).
50
Attachment theory represents a framework for studying the quality of the parent-child
51
relationship. Concerning clefts, the literature shows contrasting results : for some authors, the
3
52
birth of a child with a cleft lip and/or palate does not affect the quality of the childs
53
attachment to his or her mother as measured with Ainsworths Strange Situation paradigm
54
(Ainsworth et al., 1978) at 12 months (Hoeksma et al., 1996; Endriga and Speltz, 1997; Speltz
55
et al., 1997). Another study however (Coy et al., 2002) describes a greater prevalence of
56
secure attachment for children with a cleft lip and/or palate. This last, counter-intuitive result
57
may reflect the possibility that the parents can perceive the child as more vulnerable and
58
needing protection; attachment behaviors from the parent to the infant and from the infant to
59
the parent may then be reinforced. However, these studies remain inconclusive. It may be
60
important to take into account the parents stress and its impact on their representations. The
61
presence of a cleft is a potentially traumatic circumstance (shock of the announcement, grief
62
of the perfect child). Parental reactions and sensitivity to a baby with a cleft also depends on
63
how the malformation echoes in the parents personal history.
64
The aim of the present study is to examine whether mothers attachment representations
65
(parental working internal models, WMCI: Zeanah and Benoit, 1995)1 are different and if
66
maternal posttraumatic stress symptoms are more likely when the child has a cleft. Taking
67
into consideration the complexity of the cleft, we first hypothesized that mothers of infants
68
with a cleft would have different attachment representations than mothers of children without
69
a cleft. Our second hypothesis was than mothers of infants with a cleft would report more
70
PTSD symptoms than mothers of babies without a cleft. Our third hypothesis was that the
71
complexity of the cleft would influence these representations and more complex clefts would
72
cause more maternal PTSD symptoms. Finally, mothers of infants with a cleft with a high
73
level of stress were expected to have more altered representations.
74
75
76
1
Parental working internal models : parental representations about the child and the relationship, in other words
perceptions, subjective experiences of the infant within the context of attachment theory.
4
77
78
Method
79
Participants
80
Clinical Sample: during a 4 years period (2004-2008), all infants born with a cleft and
81
followed at the Lausanne University Hospital (CHUV) were considered for inclusion in the
82
study. Exclusion criteria were: associated genetic syndromes, non visibility of the cleft (palate
83
cleft only), parental psychiatric illness and/or drug abuse, and difficulty speaking French.
84
After these exclusions, 22 families met the criteria for inclusion in the study analyses.
85
Control Sample: control subjects were recruited at the maternity ward of the same hospital.
86
Exclusion criteria were: difficulties during pregnancy or delivery, somatic abnormalities other
87
than a cleft, psychiatric problems in the parents, difficulty speaking French. All families in the
88
cleft group agreed to participate, and there were no dropouts. In the control group, 110
89
mothers were contacted, and 42 (38%) agreed to participate. The dropout rate between 0 and
90
12 months was 14 % (six mothers). After exclusions, 36 control families were included in the
91
study. The sample characteristics are presented in Table 1. There were no significant
92
differences between the two groups for birth rank, mothers age, fathers age and socio-
93
economic status.
94
Forty-five percent of the clinical subjects were diagnosed with cleft lip and alveolus (n=10)
95
and fifty-five percent with cleft lip, palate and alveolus (n = 12). Subjects with cleft lip and
96
alveolus were considered as having simple abnormalities (CL A) and babies with cleft lip,
97
palate and alveolus (CLP) were characterized as having complex abnormalities.
98
From a theorical point of view, one would think that a bilateral cleft is more complex.
99
However, consultation with the pediatric surgical team at the Lausanne University Hospital
100
(CHUV), suggested that in reality a unilateral cleft arouses as much or possibly more concern
5
101
than a bilateral cleft among parents and children, given the asymmetry of the face. Therefore,
102
be combined unilateral and bilateral clefts in the same clinical group for this study.
103
104
***table 1***
105
106
107
Measures
108
The Working Model of the Child Interview (WMCI: Zeanah and Benoit, 1995) was
109
developed in reference to the Adult Attachment Interview (AAI: Main et al., 1985). The
110
WMCI is a one-hour, semi-structured interview for classifying mothers perceptions of their
111
infants individual characteristics, their subjective experiences and their own relationship with
112
them. The WMCI focuses on the mothers emotional reactions during pregnancy, on the
113
perception of the infants personality and development, on the characteristics of the
114
relationship with the infant, on the reactions to the infants behavior and distress, and on
115
anticipated difficulties in later development. The mother was asked to provide specific
116
examples to illustrate her infants personality and behavior. Responses were video recorded
117
and transcribed. The quality of the mothers representations was classified in a 3 categories
118
system; representations were defined as Balanced, Disengaged or Distorted , reflecting Main
119
et al. attachment classification. Balanced (secure) representations (Zeanah and Benoit, 1995)
120
express an emotional involvement in the relationship, with a sensitivity to the infants signals,
121
an acceptance of his/her own needs, a coherence between cognitions and emotions, a
122
flexibility of representations and an accommodation to change and to challenges. Disengaged
123
(insecure) representations express an emotional distance from the infant, intellectual
124
descriptions devoid of emotions, a lack of flexibility in accommodating to change, a poverty
125
of details about the infant or about the parenting experience. Distorted (insecure)
126
representations express an important emotional immersion during the interview concerning
6
127
the child, however the parent seems not fully involved in the relationship, and the infants
128
needs are generally not more accepted than in the case of Disengaged representations. The
129
caregiver may seem preoccupied or distracted by other concerns, confused and anxiously
130
overwhelmed by the infant.
131
Clinically there is no link between psychopathology and categories of the WMCI. However, it
132
is hypothesized that the secure attachment category may be a protective factor concerning the
133
development of the parent-child relationship. Mothers WMCI attachment classifications have
134
been showed to correlate with those obtained by their children in the Strange Situation
135
paradigm (Benot et al., 1997). The WMCI interview took place at the research center when
136
the children were 2 months old. Interviews have been coded by two coders, one of them
137
having been trained by Mary Main and Erik Hesse on the AAI system. Agreement was 73%
138
(Kappa=0.58). Inter-rater reliability was computed considering the three-way classification
139
(Balanced, Disengaged and Distorted). Inter-coder differences were resolved by discussion,
140
and the consensus classification was used for data analysis.
141
142
The Impact of Event Scale ( IES: Horowitz et al., 1979) was developed to measure the current
143
subjective distress related to a specific event. Its purpose is to reflect the intensity of
144
posttraumatic symptoms (McGuire, 1990). Horowitz observed that the most commonly
145
reported responses to traumatic stressors relate either to intrusion or avoidance (Horowitz et
146
al., 1979; Weiss and Marmar, 1997). This 15-item questionnaire evaluates the experiences of
147
avoidance and intrusion; seven items relate to intrusive symptoms (intrusive thoughts,
148
nightmares, intrusive feelings and imagery) and eight to avoidance symptoms (numbing of
149
responsiveness, avoidance of feelings, situations, ideas). The IES items are presented
150
regarding a specific stressor (Horowitz et al., 1979; Briere, 1997), in the present case the
151
infants malformation. The parents were asked to rate retrospectively the items on a 4-point
7
152
scale according to how often each symptom had occurred (not at all, rarely, sometimes,
153
often). Mothers were asked to evaluate the occurrence of symptoms during the first three
154
months following the birth. The resulting score represents the total of positive responses
155
regarding PTSD symptoms. A cut-point (median) was used in order to separate low-stressed
156
(LS: score < 9) and high-stressed (HS: score >= 9) parents.
157
Procedure
158
The study took place during the first year after the infants birth. A first evaluation was
159
conducted at two months (mothers attachment representations) and a second evaluation at 12
160
months (maternal posttraumatic stress symptoms). All the families signed a consent form
161
before their participation. The study was approved by the ethical committee for clinical
162
studies of the Lausanne University Hospital. Subjects of the cleft group had been recruited
163
directly by the pediatric surgery team after the announcement of the cleft during the
164
pregnancy or after birth. Control subjects was recruited by the obstetric team during the 3- to
165
4-day maternity stay of mothers with their newborn.
166
167
Results
168
The table 2 presents the proportions of the three way WMCI classification of maternal
169
attachment representations, as Balanced (secure), Disengaged (insecure) and Distorted
170
(insecure) in the control and study groups.
171
***table 2***
172
Mothers of infants with a cleft lip and/or palate presented significantly less Balanced and
173
more Disengaged attachment representations than mothers of healthy infants.
174
The cleft complexity did not significantly influence the quality of mothers representations.
8
175
Mothers of infants with a cleft showed significantly more posttraumatic stress symptoms than
176
control group mothers (mean=12.95 ; SD=10.44 for the cleft group; mean= 8.15; SD= 5.36
177
for the control group; ANOVA, F=5.032, p= 0.03). Table 3 presents the mean indexes of
178
posttraumatic stress symptoms, according to cleft type. The complexity of the cleft (CL A,
179
CLP) did not significantly influence maternal stress (ANOVA, F = 2.54, p = 0.09).
180
181
***table 3***
182
The table 4 presents the categories of maternal attachment representations according to
183
maternal PTSD symptoms. Interestingly, mothers of cleft lip and/or palate children who
184
showed a relatively low PTSD symptoms, were more frequently categorized as Disengaged,
185
as compared to mothers of the control group and to mothers of cleft lip and/or palate children
186
with a relatively high PTSD symptoms. Reciprocally, mothers of children with a cleft who
187
experienced a relatively high PTSD symptoms had attachment representations showing an
188
important emotional involvement (either Balanced or Distorted).
189
190
Discussion
191
192
The first purpose of the study was to identify possible specificities of maternal attachment
193
representations regarding infants born with a cleft. Mothers of children with a cleft presented
194
less Balanced representations than mothers of the control group. In other words, the
195
representations of mothers of the control group were more richly detailed, coherent, and
196
expressed a capacity to adapt to the baby, as compared to the cleft group. Regarding the type
197
of insecurity (disengaged or distorted) it appears that mothers of children with a cleft
198
presented more Disengaged attachment representations than mothers of the control group.
199
Viaux-Salevon et al. (2007) described that the announcement of a suspected malformation can
9
200
cause a shock and maternal emotional investment seems to stop. According to these authors,
201
there is a risk that a visible disfigurement like a cleft and insecure representations may
202
disturb the process of parenthood. Several studies showed that interaction between the mother
203
and the child born with a cleft is affected. For example, the literature indicates that mothers
204
of children with a malformation are less sensitive in the interpretation of their childrens
205
signals (Koomen and Hoeksma,, 1992). Observations in a play situation show that mother-
206
infant interactions are less active, responsive and playful, as compared to those of control
207
dyads (Field and Vega-Lahr, 1984; Wasserman et al., 1985; Wasserman et al., 1988; Barden
208
et al., 1989; Speltz et al., 1994). Speltz et al. (1994) found that children born with a cleft
209
spend less time looking at their mothers, vocalizing and smiling as compared to healthy
210
children.
211
In the general population, Langlois et al. (1995) suggest that children perceived as attractive
212
receive more affectionate care from their parents than children perceived as less attractive,
213
who receive more often routine caregiving. Considering that babies can recognize adult
214
emotional states and respond to them (Cohn and Tronick, 1983; Trevarthen, 1985), parental
215
representations (even non-conscious) can be expected to affect the dyadic functioning, early
216
interactions, and thereby the childs further development.
217
Concerning the second type of insecure representations, the frequency of Distorted
218
representations didnt differ between controls and the clefts group. One possible explanation
219
for this result is that the transition to parenthood, is a challenge for every parent (Bydlowsky,
220
1991). Then, parents may be overburdened for different reasons, such as personal guilt
221
concerning the cleft or personal history, etc
222
The second purpose of the study was to identify possible posttraumatic stress symptoms in
223
mothers of infants born with a cleft. Mothers in the cleft group reported more posttraumatic
224
stress symptoms than mothers of the control group. As defined by the IES questionnaire
10
225
(Impact of Event Scale: Horowitz et al., 1979) PTSD symptoms relate either to intruding
226
memories or to avoidant strategies. Bessis and Gonties (1983 ) and Moriaux et al. (1990) also
227
reported that some parents may see only the abnormality of the child. This could be illustrated
228
by the following example of a mother who experiences intrusive thoughts and images :
229
I thought of him as a cleft, I didnt see a beautiful baby. I always imagined him with a cleft,
230
yes when I thought of him I couldnt see his face. I could see all the rest, but I could not see
231
his head.
232
The second aspect of PTSD is avoidant strategies which could be illustrated by this mother:
233
I tried to forget the baby, as if I didnt carry a baby in my womb any more Suddenly I
234
stopped talking. I always talked to my baby. And then, slowly, I stopped. I think I was too
235
afraid that things would go wrong, so I just broke off. The maternal affection just couldnt
236
develop any more. It causes a certain distance .
237
Concerning the type of the cleft (CL A or CLP), the study showed that maternal
238
representations and PTSD symptoms were not significantly affected. Therefore, insecure
239
representations and PTSD symptoms did not appear to be related to the severity of the cleft.
240
Endriga and Speltz (1997) showed, in mother-infant (3 months old) face-to-face interactions
241
that mothers of less impaired infants (cleft palate only) are more distant than mothers of more
242
impaired children (cleft lip and palate). They hypothesized that the first mothers received less
243
professional attention and support than those of infants with CLP.
244
The most interesting result of the study is that there are different maternal representations
245
associated with the PTSD symptoms level. Mothers of the cleft group, who experienced a
246
high symptoms level, were apparently more emotionally immersed in the relationship with
247
the infant, which was expressed as a Balanced (secure) or a Distorted (insecure)
248
representation. Unexpectedly, we found that mothers of children with a cleft, and who
249
experienced the least PTSD symptoms, often had more insecure representations, as compared
11
250
to other mothers. More precisely, they had significantly more Disengaged representations.
251
This result is surprising and probably could be understood as a correlation between the two
252
variables. In others words, its possible to define a hypothesis where mothers experienced low
253
stress because they are disengaged or vice versa. This paradoxical result could be explained
254
by Bardens study (Barden et al., 1989) which showed that mothers of children with a cleft lip
255
and/or palate have been found to rate their parental satisfaction higher than mothers of
256
children without a cleft, even though they behave in a less nurturing manner. This result
257
suggests that the infants facial malformation may affect mothers representation and the
258
quality of the infant-caregiver interaction, the parent being unaware of it. Moreover, Shaw et
259
al. (2006) mentioned that persons who express stress avoidance symptoms might be
260
particularly unable to answer questions about, precisely, avoidant symptoms. Therefore, it
261
may be that disengaged mothers failed to report their actual symptoms, and consequently
262
were wrongly categorized as having a low stress. Taken to the extreme, it seems that very
263
symptomatic avoidant people also avoid participating in such research (Shaw et al., 2006).
264
The risk tied to avoidance symptoms revealed by Holditch-Davis, is that the avoidant parents
265
are less inclined to use care facilities that would remind them too much of the traumatic event
266
(Holditch-Davis et al., 2003). This aloofness and lack of sensitivity could be understood as a
267
defense mechanism. For example, a mother with a child having a malformation who showed
268
Disengaged representations and low PTSD symptoms, spoke as if nothing special had
269
happened to her baby:
270
Well, I wasnt shocked at all, because I was alone when I gave birth and I didnt even pay
271
any attention. I dont believe that it changes anything. He was 15 days later than term, so I
272
told myself that he didnt want to show himself.
273
This explains how mothers can behave as if they dont care about specific needs concerning
274
the cleft, or more generally concerning care-giving. The mothers explanations concerning the
12
275
discovery of the cleft outlines a poverty of emotions, a distance, a denial and an
276
rationalisation process ( because I was alone). There is a cold emotional tense: (he
277
didnt want to show himself). This coincided with the definition given by Perry (1990) ; the
278
individual deals with emotional conflicts, or internal or external stressor, by devising
279
reassuring or self-serving but incorrect explanations for his or her own others behaviour
280
(p.21). Taking into account the risk that these parents deny some of the difficulties with the
281
child, Holditch-Davis (Holditch-Davis et al., 2003) shows that it is especially important to
282
investigate, during in-depth interviews, the avoidant symptoms tied to post-traumatic stress
283
(Honig et al., 1999). In our study, the evaluation of stress symptoms is based on a
284
questionnaire only. There may then be an important limitation to these results. It would be
285
important in future studies to investigate parental stress with a semi-structured interview.
286
In conclusion, in spite of important limitations (such as the size of the groups and type of
287
measures used), the results of the present study suggest that the birth of an infant with a cleft
288
could be a risk factor for atypical parental representations and an atypical parent-child
289
relationship. Further studies need to evaluate the consequences of a cleft on parental
290
representations, on parental defense mechanisms and on the mother-infant relationship. Even
291
if the present study highlights the importance of offering support to the parents of infants born
292
with a cleft who experience even mild emotional stress reactions, further studies should
293
investigate the adequacy of such support. It could be difficult for some of the parents to accept
294
psychological help, especially when they describe themselves as having low stress and are not
295
especially preoccupied with the infant. In a study concerning suspicion of malformation,
296
Viaux-Salevon et al. (2007) recommended offering psychological support during pregnancy
297
because at birth parents are often too fragile to accept professional support that they consider
298
to be intrusive.The intervention of healthcare professionals may help disengaged mothers to
299
stay involved with their infant.
13
300
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18
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Table 1: Demographic data
403
404
405
406
Cleft group (N=22)
Control group (N=36)
407
408
Gender (male)
17 (77%)
15 (42%)
409
Birth rank (1st)
8 (36%)
14 (39%)
410
Cleft lip and alveolus
10 (45%)
0 (0%)
411
Cleft lip, palate and alveolus
12 (55%)
0 (0%)
412
Mothers age (years)
31.1 (3.8)
32.6 (4.51)
413
Fathers age (years)
33.2 (4.6)
35.0 (5.22)
414
Socio-economical Status (range:1-4)
2.7 (0.6)
2.82 (0.69)
415
416
417
418
419
Legend: values represent actual numbers (gender, birth rank, CL A, CLP) and means for
420
other variables (percentages or standard deviations in parenthesis).
421
422
Table 2: Categories of maternal attachment representations, according to groups
423
Control group
Cleft group
Chi-square
(n=36)
(n=22)
(df=1)
P value
19
21 (58%)
7 (32%)
3.84
0.05
5 (14%)
8 (36%)
3.97
0.05
10 (28%)
7 (32%)
0.11
NS
424
Legend: Global Chi-square (df=2)= 5.14, p< 0.07. Separate chi-squares are computed for
425
each characteristic against all others.
426
427
428
429
20
430
Table 3: Post traumatic stress symptoms according to cleft type
431
Control group (n=36)
CL A (n=10)
CLP (n=12)
mean (SD)
mean (SD)
mean (SD)
8.15 (5.36)
12.30 (11.73)
13.50 (9.73)
P value
2.54
0.09
432
433
434
Legend: Anova control versus cleft groups groups together: F=5.032, p=0.03.
21
435
Table 4: Maternal attachment representations categories according to maternal stress
Maternal balanced
Control
Cleft group, low
Cleft group, high
Chi-square
group
stress
stress
(df=2)
value
(n=36)
(n=12)
(n=10)
21 (58%)
3 (25%)
4 (40%)
4.34
NS
5 (14%)a
7 (58%) ab
1 (10%) b
11.29
0.01
10 (28%)
2 (17%)
5 (50%)
3.03
NS
representations
Maternal disengaged
representations
Maternal distorted
representations
436
437
Legend: Global chi-square (df: 4) = 13.10; a p<0.01, b p<0.05 for two by two comparison
22
438
Impact of a cleft lip and/or palate on maternal stress and attachment representations
Jose Despars Ph.D.* is Psychologist at the University Service of Child and

Adolescent Psychiatry (SUPEA) in Lausanne, Switzerland.
Camille Peter* is Psychologist at the University Service of Child and Adolescent

Psychiatry (SUPEA) in Lausanne, Switzerland.
Ayala Borghini Ph.D. is Psychologist at the unity of research of the University

Service of Child and Adolescent Psychiatry (SUPEA) in Lausanne, Switzerland.
Blaise Pierrehumbert Ph.D. is Psychologist and the chief of the unity of research of
the University Service of Child and Adolescent Psychiatry (SUPEA) in Lausanne,
Switzerland.
Stephanie Habersaat is Psychologist at the unity of research of the University
Service of Child and Adolescent Psychiatry (SUPEA) in Lausanne, Switzerland.
Carole Mller-Nix, M.D. is the chief of the Pdopsychiatrie de Liaison, SUPEA,
in Lausanne, Switzerland.
Franois Ansermet, M.D. is Professor and chief of the Service of Child and
Adolescent Psychiatry in the University Hospital of Geneva HUG, Switzerland.
Judith Hohlfeld, M.D. is the chief of the Department of Pediatric Surgery at the
Centre Hospitalier Universitaire Vaudois (CHUV) in Lausanne Switzerland.
* The first two authors have contributed equally to this article.

Reprint Requests: Jose Despars , Ph.D., Service Universitaire de Psychiatrie de lEnfant et
de lAdolescent, SUPEA CHUV, Pdopsychiatrie de Liaison, Ave. Pierre Decker 5 , 1011
Lausanne. Telephone : +41(0)21-3143535, Fax : +41(0)21-3143786 ; Josee.Despars@chuv.ch
This study is supported by private grants: The Fondation Rothschild and the Fondation
pour la Psychiatrie de la Petite Enfance and is the result of collaboration between the SUPEA
and the CHUV.

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AmeriFace Board of Directors

President - David Reisberg, DDS

Cleft Advocate, AmeriFace program

March 31, 2015

AmeriFace Board of Directors

March 31, 2015

8092 SW 115th Loop

AmeriFace - Cleft/Craniofacial Advocates

Board of Directors - March 31, 2015

Making a world of difference in a world of facial differences...

mission | about us | donate | press |

Debbie Oliver, Parent of an adult child born with a facial difference, NV

Robin Remele, Parent of a child born with a facial difference, IL

Action Team Coordinator

Joyce Bentz, Parent of a child born with a facial difference, IN

ameriface, PO Box 751112, Las Vegas, NV 89136-1112

AmeriFace Board of Directors

March 24, 2015

AmeriFace - Cleft/Craniofacial Advocates

as well as the nationally-recognized and award-winning cleftAdvocate organization and the

Post March 13 at 12:15pm: John Davis

Post March 13 at 12:19pm: Debbie Oliver

"Neil Gillespie" <neilgillespie@mfi.net>

Debbie Oliver, Executive Director

Bergen helped others with facial disorders

This story appeared in print on page A1

Copyright 2015 HeraldTribune.com All rights reserved. Restricted use only.

8 mins Las Vegas, NV

Making a world of difference in a world of facial differences...

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Impact of a Cleft Lip and/or Palate on Maternal Stress and

cleft, maternal representations, posttraumatic stress symptoms

Concerns about the well-being of infants born with a

difficulties (Collett and Speltz, 2006), as well as for

Dr. Despars and Dr. Peter are Psychologists, Pediatric Psychiatry

Cleft PalateCraniofacial Journal, July 2011, Vol. 48 No. 4

et al., 1988; Barden et al., 1989; Koomen and Hoeksma,

Parental working internal models are parental representations about the

Cleft Group (n 5 22)

Control Group (n 5 36)

Hospital (CHUV) were considered for inclusion in the

Despars et al., CLEFTS IMPACT ON MATERNAL STRESS AND REPRESENTATIONS

Categories of Maternal Attachment Representations, According to Groups*

Maternal balanced representations

WMCI is a 1-hour, semistructured interview for classifying

by discussion, and the consensus classification was used for

Cleft PalateCraniofacial Journal, July 2011, Vol. 48 No. 4

TABLE 3 Posttraumatic Stress Symptoms According to

* Analysis of variance control versus cleft groups together: F 5 5.032, p 5 .03.

Mothers of infants with a cleft lip and/or palate

appears that mothers of children with a cleft presented

Maternal Attachment Representations Categories According to Maternal Stress*

Maternal balanced representations

Cleft Group, Low Stress

Cleft Group, High Stress

* Global chi-square (df 5 4) 5 13.10. NS 5 nonsignificant.

Despars et al., CLEFTS IMPACT ON MATERNAL STRESS AND REPRESENTATIONS

Gonties (1983) and Moriaux et al. (1990) also reported that

The second aspect of PTSD is avoidant strategies, which

Concerning the type of the cleft (CL6A or CLP), the

Therefore, it may be that disengaged mothers failed to

This explains how mothers can behave as if they do not

Cleft PalateCraniofacial Journal, July 2011, Vol. 48 No. 4