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					Children’s Hospital and Regional Medical Center




             Family Faces
                 A Newsletter for Families of the Craniofacial Center
                           Winter 2008 Volume 2 Number 2




          Changing Faces and Lives                                   By Nancy Knoblock Hunton

                              As a medical social             even those they may think sound silly. And, in
                     worker, Cassandra L. Aspinall,           turn, she helps the craniofacial team understand
                     MSW, discusses face-altering             the family’s concerns and priorities. Each family,
                     procedures with children and             she says, has its own set of values that must be
                     their parents to make sure their         taken into account.
                     expectations are realistic. “It’s                An advocate of family-centered care, she
                     fine if someone thinks, “I will be       believes that parents have a right to protect their
                     more positive about myself if            child and make decisions they believe are in the
                     my nose looks better,” says              child’s best interest. However, in some cases,
                     Aspinall. “But there’s nothing           children think that their appearance in fine, but
worse than a child thinking an operation is all               their parents, doctors and others imply that the
that’s needed to improve the chances of having a              way they look is a problem that has to be fixed.
boyfriend or girlfriend or to be accepted by the              This can create a conflict that should be explored.
popular kids for the first time.”                                     Some parents start the dialogue by
        Aspinall provides psychological and social            dealing with their initial reactions to their child. “I
support for families at Seattle Children's Hospital.          encourage them to admit that when they first saw
Working with the treatment team in the                        their child or learned of their diagnosis they were
Craniofacial Center, she helps patients to better             upset,” Aspinall says. “Even for me, after having
understand medical conditions and weigh the                   been born with a cleft lip and working with so
benefits and risks of treatment. Both she and her             many
14-year-old-son were born with clefts, so she has             people with
first-hand experience in addition to her                      children with              IN THIS ISSUE
professional training.                                        facial
        Her role is to have in-depth conversations            differences
with patients and their families about their                  over the           Changing Faces and Lives ……1
expectations, fears and hopes for the future. “My             years,             Liaison Link……………...………3
responsibility is to introduce the idea of patient            seeing my          Letters to the Editor…………….4
involvement,” says Aspinall. “I ask children if               own child in       Scholarships…………………….4
what the doctor said made sense to them, if it                delivery took      Becoming an Advocate………...5
was scary, if they have any questions. That                   some               Useful Phone numbers………...5
allows them to understand that it’s their body.               adjustment.        Care Organizing Tools…………6
Younger children, especially, don’t want to be in             That doesn’t       Classes and Events……………6
charge and make all the decisions, but they do                mean I don’t       Camp News………………........7
                                                                                 Camp Highlights……………..…8
want the opportunity to participate along the way.            love and           Picnic Highlights…………….....9
                                                              accept him.        Farewell to Bryan Williams…..10
The Family                                                    It means I’m       2008 Conferences………….…11
       Acting as a translator of sorts, she makes             a human
sure the family understands their child’s diagnosis           being.”
and treatment options by encouraging questions,               Cont.on p.2




                                                          1
Changing Faces and Lives from p.1                           timing of such procedure and their impact on the
The Community                                               child needs to be discussed. In addition to
        As children head off to school, they have           providing a benefit, they can also pose risks, such
more social encounters and more chances with                as problems with anesthesia, infection, and
others through sports, clubs, music, and social             unsatisfactory outcome. Other drawbacks to
events.                                                     consider include missing school, extracurricular
        “Identity development becomes more                  activities, and contact sports.
complex during this time, as children enter more                     She reminds parents that improving their
formalized educational and recreational settings,”          child’s appearance is not like other ways of
says Aspinall. “All children, including children            improving a child’s life, such as going to soccer
with facial conditions, must cope with how they             camp or signing up for French lessons. That is
are perceived.”                                             not to say that the physical risk isn’t worth taking,
        Juggling treatments, seeking additional             but considering this reality is important.
assessments, and evaluating elective procedures                      Ultimately, the risk belongs to the child,
can further complicate the school year.                     and, therefore, she believes children should be
Psychological rather physical issues may drive              informed as much as possible and involved in
changes to appearance, and both need to be                  decision-making in a developmentally appropriate
considered in deciding the best course of action.           way that also takes into consideration the values
Parents may be nervous when sending their child             of the family. As patients change and develop,
to school. “When your child is born with a                  she urges them to examine the relationship
medical condition you have over-activated radar.            between who they are and what they look like,
You’re on the alert for things that others don’t            and to carefully evaluate any alteration of their
have to worry about, and you want to protect,               appearance.
protect, protect. But, over time, backing off may
allow your child that magical moment when he or             Dealing with Feeling
she meets somebody who’s supportive and                              How people look can strongly affect how
welcoming, and has such a great time.”                      they feel about themselves. Both boys and girls
                                                            with facial differences may experience low self-
Society                                                     esteem, anxiety, and depression but express it in
          In addition to the local community, society       different ways. Counseling may be needed to
at large may influence a decision about whether             clarify the motivation for surgery and perceived
or not to undergo a craniofacial procedure.                 benefit.
(While some procedures like opening an airway                        Aspinall fully endorses opting for
are obviously not optional, others are.) Having a           reconstructive surgery if people believe it will help
cleft lip revision surgery, for example, may help           others to perceive them as they truly are. “I
the child and family feel more comfortable and              always tell insurance companies that the reality is
accepted in society.                                        that we’re not taking normal structures and
          “Although parents love their children even        making them more perfect,” she says. “We are
before any operation,” says Aspinall, “they worry           taking abnormal structures and making them
about issues of inclusion and acceptance. The               more normal.”
decision to have surgery is bittersweet, because if                  Her goal is not to dictate what other
the world were a perfect place, we would all                people should do but to discuss feelings and
tolerate each other regardless of how we look.”             values. She constantly reminds children and their
          Making modifications chiefly for the sake         families to talk together about the bumps in the
of appearance, particularly in children too young           road. “They come up for everybody, she says.
to give informed consent is a matter of debate in           “And the reality is your child will have a lot of
medical circles. Many plastic surgeons argue                strengths and a lot of interests. You’ll be proud of
that altering facial features is necessary to reduce        her and mad at her like any other child. The key
possible stigma, while some medical ethicists               is to remind ourselves that we can make it
counter that exposing a human to avoidable risk             through life’s challenges, both planned and
is unacceptable.                                            unplanned.
          Aspinall encourages parents-and                         Reprinted with the permission of the
surgeons-not to automatically perform secondary             Foundation for Faces of Children
revision before a child enters kindergarten. The



                                                        2
                                                 Liaison Link
                                             By Catherine Rogers


This is the second Family Faces Newsletter I have edited since being hired as the Craniofacial Center Family
Liaison. In the last newsletter (July ’07) I posed the question to readers “How do you handle staring?” My 15
year old son Jack, who has a cleft, handles staring quite naturally. His charm and relaxed demeanor go a long
way in diffusing any rudeness or ill-will. He is just himself and who can argue with that? Once again, Jack is
teaching me about life. He has done this since he was born. But, as his mother who is (I’ll say it) sensitive and
protective, I need some pointers.

I decided to do some sleuthing on this subject. My research led me to a few resources I would like to share.
Each of them offers great advice and the one common theme in each is to practice how to respond. Try different
responses and see which one feels the most natural. The more you practice the more natural your response will
feel.

Changing Faces. Everybody’s staring at Me! How to communicate when you have an unusual face. UK. 2002.
Pamphlet available in craniofacial clinic. This pamphlet encourages good basic communication skills with
specific situations in which to write/practice responses.

Changing Faces. My Child Looks Different. UK. 2003. Pamphlet available in craniofacial clinic. Focus is on how
parents and family cope with other people’s reactions.

Kaufman, Gershen, et al. Stick Up for Yourself! Every Kid’s Guide to Personal Power and Positive Self-Esteem.
Minneapolis, MN: Free Spirit Publishing, 1999. This book uses simple words and real-life examples on how to
stick up for yourself. It discusses feelings, needs and dreams for the future.

Palmer, Pat. Teen Esteem: A Self-Direction Manual for Young Adults. Atascadero, CA: Impact Publishing, 2001.
This book is for the teen reader. It provides guidance in a workbook format on developing self-esteem and a
positive attitude.

Bristow, Logan. Making faces: Logan’s Cleft Lip and Palate Story. Ontario, Canada: Pulsus Group, 2007. This
book is distributed and sold by About Face International. Both of my children loved this book. It reads like a
photo album chronicling Logan’s life through pictures and journaling.

Center for Young Women’s Heath, Children’s Hospital Boston. Building a Healthy Body Image and Good Self-
Esteem: A Guide for Teens with Facial Differences.
Website:http://www.youngwomenshealth.org/facial_difference.html. This site is not just for women and girls. It
offers friendly advice and practical tips written by teens for teens.



     Visit the Children’s craniofacial website for
     more reading resources and links to useful              If you have books you would like to
     websites.                                               share with others, please send your
     http://craniofacial.seattlechildrens.org/home/          suggestions and short reviews to me at
                                                             Catherine.rogers@seattlechildrens.org




                                                         3
                                          Letters to the Editor

Editor’s note: As the Craniofacial Center Liaison and editor of the Family Faces Newsletter I aim to
open and create a dynamic dialogue in and amongst the families of the craniofacial center. I try to
include information that is useful for the challenges typical of “our” families. If you have any
suggestions or would like to submit an article, please email them to me at
Catherine.rogers@seattlechildrens.org

Following the publication of the Family Faces July ’07 I received the following suggestion. Thank you
for your input, Mary Jo!
Dear Catherine,
        Thank you for the most recent issue of the newsletter. It looks great! I am especially
appreciative of the inclusion of the "Dental Bill" section as this has been a huge challenge for our
family. I have already established procedures with our own insurance companies, but for new families
just starting through the maze of medical and dental insurance this is a big help. It shouldn't have to be
so difficult, but given that it is then you should need to know where to go for help. I never had seen the
"About Your Dental Bill" brochure before and am glad to know that families will get that at the start. I
had to wade through it all on my own -- it took years...
        By way of introduction, our son, Sean, is nine and a patient at CHRMC's craniofacial center. It
has been a great resource for us these past nine years. You asked for ideas in the "Liaison Link"
section. I have a couple of thoughts for you.
        One idea is for a list of books and publications -- factual or inspirational -- that families have
found helpful. You could solicit contributions from patient families and perhaps a one or two sentence
description of each book.
        Another idea is to list all the national craniofacial associations and link up with any family-
oriented conferences. For example, I went to a conference of the North American Craniofacial
Association in Las Vegas last summer (July 2006) and was kind of surprised to be the only person from
the Northwest. I think the newsletter could be a great place to let folks know about other organizations
such as Let's Face It, About Face, etc. Also just to let folks know where there are other craniofacial
centers across the country in case they have to move or are seeking expertise in a given craniofacial
difference. Mary Jo Gallagher




                                           Scholarships
            •   Cleft Palate Foundation College Scholarship. For more information visit:
                www.cleftline.org .
            •   The Aboutface Scholarship Program. For more information visit:
                //www.aboutfaceinternational.org/programs/national_scholarship.php




                                                    4
    Becoming an Advocate for your Child
    By Catherine Rogers, Marsha Ose, RN, CL, and Ember Fry

While a team of professionals takes care of your              consider all options. Remember, it is always
child at Children’s, it is really the family that has         ok to ask more questions.
the most crucial role to fill. No one knows your
child better than you so it is up to you to               •   Understand the chain of command for
effectively pass on that knowledge. The process               your child’s providers.        Ask how the
of gathering and sharing information is critical as           system works for processing requests,
you become as advocate for your child.                        questions, etc. Trust that your requests are
                                                              being considered by the team as quickly as
Being an advocate for your child may seem                     possible. If you are waiting for a call back,
overwhelming. Here are a few pointers to help                 follow up with the original person you
you become an effective advocate for your child.              contacted. They will know the status of your
                                                              request. Understand that it is not productive
•   Schedule     and     keep     appointments.               to call numerous people with the same
    Scheduling appointments can be difficult and              request as this diminishes the efficiency in
    we appreciate your efforts to keep                        which requests are met.
    appointments that are scheduled. We
    understand that sometimes it is necessary to          •   Ask questions. Do you have questions or
    cancel an appointment, for instance if your               concerns about your child’s care in the
    child has chicken pox, a fever, or another                Craniofacial Clinic? Start by calling one of
    communicable disease. If you do need to                   the team’s nurses or social workers to get
    cancel, please try to do this as soon as you              help. Be sure to leave a message if you get
    know you will not be coming. At that time,                someone’s voice mail. Remember that our
    talk to the Family Resource Coordinator                   staff is often busy in clinic or addressing
    about rescheduling.                                       other needs and issues. This may seem
                                                              frustrating but be assured that voice mail is
•   Gather information.        Gather as much                 checked regularly by team members and all
    information as you can at appointments and                calls are returned.
    hospital stays. It may be helpful to bring a
    notebook to take notes and write any                  •   Call the Center. If you have concerns
    questions that arise. If you don’t understand             about how your child is coping at home,
    a procedure, the timing of an operation, or               school or in anticipating an upcoming
    anything else, be sure to ask about it. The               surgery ask to see a Social Worker. The
    more you understand, the better informed                  Social Workers can also assist with travel and
    your decisions will be. A notebook is also a
    good place to keep track of post-operative
                                                              transportation                          issues.
    care.

•   Listen to your child’s care team. After
    listening to your child’s care team, carefully




                                 Useful Phone Numbers
                                 Appointments and scheduling: (206)987-2008
                                 Craniofacial Nursing line: (206)987-1117
                                 Dawn Leavitt, RN: (206)987-7479
                                 Marsha Ose, RN: (206)987-2188
                                 Suzanne Siegel, RN: (206)987-2458
                                                    5
                                 Monica Andrews, LICSW: (206)987-3159
                                 Cassy Aspinall, LICSW: (206)987-3271
                                       Care Organizing Tools

The Care Notebook and Care Organizer are tools for families who have children with special health care needs.
Families use Care Notebooks to keep track of important information about their child's health and care. This
makes it easier to find and share key information with their child's care team.

What are the Care Notebook and Care Organizer?
The Care Notebook is a 3-ring binder. It contains supplies that make it easier to find information quickly. These
supplies include plastic pages that hold business cards and several pocket dividers that hold papers. The Care
Notebook also contains forms that families may fill in. These 39 forms are available below.

The Care Organizer is a plastic expanding file folder with individual pockets labeled to help organize paperwork.
Multi-lingual including English, Spanish, Vietnamese, Russian, Chinese and Somali.

How can they help?
In caring for a child with special health needs, families may get information and paperwork from many sources.
Families can use the Notebook or Organizer to help organize the most important information in a central place.


How do I order one?
Families in Washington State may order one CARE Notebook one CARE Organizer for a child with special
needs at no cost. Current funding only supplements the products and materials for families in Washington State.
Therefore, for orders out-of-state, the Notebook and Organizer cost $20 each. Families should call Children’s
Resource Line and provide their name, mailing address, phone number, and the item they would like to order:
By phone                                            By internet
1-866-987-2500, option 4                            http://www.cshcn.org/resources/CareNtbk.cfm
(206)987-2500m option 4


                                  Children’s Classes and Events
                                                      Children’s Community Health Fair
                                                      A free, hands-on event for families and children ages
 Sibshops                                             3 to 8. Learn about health and safety and Children’s
 For siblings of Children with Special                Hospital through fun activities including Teddy Bear
 Health and Development Needs                         Clinic a visit from the Tooth Fairy, ambulance tours,
        Dates: For siblings ages 10-13:               finger casting, wheelchair obstacle course and more.
               March 8, May 2                         Free bike helmets and fitting for adults and children.
               For siblings ages 6-9                  Quantities are limited and wearers must be present.
               April 5, June 7                        Date:Saturday, March 1 10a.m. to 2 p.m.
                                                      Location: Children’s Whale Parking Garage
        Time: 2:00 – 5:00 p.m.                        Learn more: Call (206)987-1569
        Fee: $20 (includes snack)
        Location: Sound Café, Children’s              2008 Pathways Lecture Series for Parents
        Hospital                                      Children’s joins ParentMap magazine in presenting
 For registration materials and additional            this series for parents where leading experts on child
 information, call (206) 987-3285                     development address the many challenges and
                                                      concerns that parents face in raising children.
                                                      Lectures are held at various locations throughout the
                                                      Puget Sound region. For more details on each lecture
                                                      visit www.parentmap.com/pathways or call (800) 838-
                                                         6
                                                      3006.
                                              Camp News
                                       By Monica Andrews, LICSW
This past summer 42 youth from the Craniofacial Center attended a week long camp session at Camp Killoqua.

The camp offered a great opportunity for the kids to meet others like themselves as well as enjoy swimming in
the lake, arts and crafts, tie dying and even horseback riding.

As the liaison between the Craniofacial Center and Camp Killoqua, I was honored to share time with the
campers. I watched the kids learn and grow together throughout the week and form a great sense of
community.

I am excited to announce that we will continue to offer a camp for patients from the Craniofacial Center.
Although we have great respect and fond memories of Camp Killoqua we will begin a new collaboration this
summer and in years to come with Camp Korey. Camp Korey has additional support services available for
registration, recruitment and during the week of camp that will better serve our population. In addition, the camp
is free for all attendees!

Camp Korey is a proposed affiliate of the “Hole in the Wall Camps,” founded by actor Paul Newman in 1988. Ten
such camps exist worldwide, serving nearly 10,000 kids a year. This is Camp Korey’s first summer and we are
excited about the opportunity to learn and grow with the camp over the years.


               Camp Testimonials

 Hello, I’m Timothy Gormley, and I attended a
 Craniofacial Camp at Camp Killoqua this past
 summer. I met a lot of nice counselors and cabin
 mates, some from other cabins. Learning archery
 was my favorite thing at the camp, along with riding
 horses-mine was named Pawnee-, swimming, a
 scavenger hunt, and boating in a rowboat. I liked
 the fact that, unlike school, no one laughed at me
 because of my neck, and that I could feel like a
 happy and normal kid. I would also like to say                  The Craniofacial Center announces
 Thank You to Ms. Andrews for telling my parents                             Camp Korey
 about the camp. See you next year!                                         Summer 2008
                                                                The camp is for youth ages 7-16 with
 Camp Killoqua was nothing like any other camp in                         facial differences
 the world! I had more fun than I have ever had in                   July 21-25 Ages 7-11 years
 my whole life. I made so many new friends it was                 July 28- Aug. 1 Ages 12-16 years
 great. We got to see some deer, rabbits, chipmunks
 and squirrels. They were so cute! I really enjoyed                  Activities include boating, fishing,
 the horseback riding it was so, so, so fun! We got to               swimming, biking, noncompetitive
 do tie dye, go row boating, swimming, archery and                   sports and recreation, discovery
 climb the rock wall! The rock wall was a little scary               science zone, climbing wall, theatre
 but with the help from my new friends, I did it. One                and arts and crafts.
 of the best parts was at night we all sat around a
 camp fire and had so much fun laughing and                           For more information contact:
 laughing the whole time! All the councelors and                              Hilary Carey
 staff were so nice and helpful. I’m coming back next                         425-577-2084
 year for sure!! By Darcy Parker                                         hcarey@campkorey.org
                                                                          www.campkorey.org

                                                         7
Camp Killoqua 2007 Highlights




                            8
                                Big thanks to the Schoegll Family!
The annual Craniofacial Center family picnic provides a relaxed atmosphere away from the hospital for families
of the Craniofacial Center and is looked forward to by all. Nancy Schoegll, her husband Jim and daughter
Christine (age 10) have assumed leadership, time and effort, making the annual picnic possible year after year.
This year, under cloudy skies and rain, the Schoegll family showed their true Northwestern spirit by providing two
tents under which food was served and children enjoyed arts and crafts. Many thanks to the Schoeggl family
whose dedication is truly appreciated by the center families.

Keep posted for next year’s picnic date!


                                           Picnic Highlights




                                                        9
                                            Dear Families

                                            As many of you have learned I have
      A Fond Farewell                       left my position at Children’s
                                            Hospital as of mid October. I
                                            wanted to take the opportunity via
                                            the newsletter to let each of you and
The Craniofacial Center is proud to         your children know how privileged I
    honor and thank Dr. Bryan               feel to have been part of your lives.
  Williams, Orthodontist, whose             I was a member of the craniofacial
years of service in the Craniofacial        team for almost 17 years and during
 Center have enriched the lives of          this time I have been truly blessed to
 his patients and his colleagues.           be part of a dedicated group of
                                            professionals with a passionate
 We wish him the best in this next          focus on the well being of children
       chapter of his life!                 with craniofacial conditions. It has
                                            been a true personal and
                                            professional pleasure to get to know
                                            you and your wonderful children. I
                                            am now looking for a different career
                                            pathway for the last segment of my
                                            working life and as I move through
                                            that phase of my life I will continue
                                            to carry warm memories of all my
                                            interactions with you and your
                                            children. I wish the very best future
                                            for you and your wonderful children.
                                            May the road of life bring them joy
                                            and fulfillment.

                                            Bryan Williams




                                       10
     2008 North American Craniofacial Family Conference (NACFC)
                                   July 21 - 23, 2008
                      Tuscany Suites & Casino, Las Vegas, NV
           For more information visit: http://www.cleftadvocate.org/nacfc.html




      7th annual Cleft Palate Foundation Connections Conference.
                                    April 12, 2008.
                     Loews Philadephia Hotel, Philadelphia, PA.
For more information visit: http://www.cleftline.org/parents/connections_conference




                18th Annual Cher's Family Retreat weekend
                      Myrtle Beach, SC, June 26th-29th, 2008.
          For more information visit: http://www.ccakids.com/prgRet.asp




                                           11
Learn more about Children’s Craniofacial Center at http://craniofacial.seattlechildrens.org/home/


                         •   Resources for patients and families
                         •   Links to information and support
                         •   Answers to commonly asked questions
                         •   Clinical research and advances
                         •   Recommended reading
                         •   Glossary of terms
                         •   Family Faces newsletter
                         •   Featured stories
                         •   Important telephone numbers




   Craniofacial Center

4800 Sand Point Way NE, W-7847
Seattle, Washington 98105

Phone: (206) 987-2208

Fax: (206) 987-3064




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