Jewish World Review June 23, 2000/ 20 Sivan, 5760
http://www.jewishworldreview.com --
BRENNA NAY is a vibrant, intelligent twelve year old. She loves animals
and marine life and hopes one day to become a marine biologist. She is
artistic and likes to paint and draw. She is also musical. Brenna plays
viola in her school orchestra and spends hours listening to 'NSYNC and her
other favorite singing groups. People describe her as affectionate,
compassionate and lots of fun, possessing a "wicked" sense of humor.
She is not unlike many other bright, creative adolescents with one
exception; Brenna has a very rare medical condition called Hajdu-Cheney
Syndrome. While this has no effect on her mind, and is not physically
incapacitating, it does markedly affect her appearance, causing her to look
different from other girls. In Brenna's case, her eyes protrude, her lower
jaw and chin are severely underdeveloped, and she has an unusual amount of
facial and body hair. Her medical condition also causes Brenna to have a
rather bland facial expression, sometimes masking her inner vibrancy and
sense of fun.
Unfortunately, too many American families face this growing problem. This is especially
troubling since normal appearance is a fundamental feature of healthy human interaction and
well-being. Distortions from normal appearance may occur as a result of congenital anomalies,
and children with such unresolved abnormalities may suffer significantly from peer ridicule,
frequently lowering self-esteem. Often times these children limit their participation in
educational and social activities, which are necessary to develop stable behavior later in
adult life.
The American Society of Plastic Surgeons (ASPS) and 14 other organizations have banded together
to form the Coalition for Insurance Coverage of Children's Deformities (CICCD). Together they
are committed to raising awareness of insurance denials for treatment of children's deformities
and maximizing Congressional support for the Treatment of Children's Deformities Act (TCDA).
TCDA would require insurance companies to cover reconstructive surgical procedures for those
children with congenital or developmental deformities, diseases or injuries. Coverage would be
required for surgical procedures designed to improve the function of abnormal body structures,
or to restore those body structures to normal appearance.
Currently 75 members of the House of Representatives and five members of the Senate are
co-sponsoring TCDA. Persistent grassroots activity will be required for CICCD to achieve its
legislative goal of enacting TCDA.
You can help Brenna and other children like her by following one or more of the following
activities:
"Wherever we would go," recalls Amy Nay, Brenna's mother, "people would
turn and stare. Sometimes, in the mall, children would scramble to get a
better look. Young kids would tug at their moms and point to Brenna and
asked why my daughter looked the way she looked.
"Brenna didn't say much at these times. She seemed to have a natural
dignity well beyond her years. But it was clear she was upset and
embarrassed."
"When these things occur, it's extremely painful for the child and the
parent," says Mrs. Nay. "What does a mother say or do at times like these?
In some of those television movies of the week, about handicapped or ill
children, the parents always seem to know the perfect things to say. Well,
real life is different. When your child is being hurt you're like a mother
tiger - you want to protect your child and strike out in anger. But I knew
that wouldn't help. I always wished I could come up with something profound
to say; something that would change people and make them understand what they
were doing to my daughter.
"I grasped for a way to teach others a lesson without making them too
uncomfortable. I wanted to change the world for my daughter. What I wanted,
I think, was something magical to happen, to help people understand. I came
to realize that I couldn't count on magic. But I could count on my
daughter's courage and on the lessons we all learn from experience."
When Brenna was nine years old, the Nay family moved from Michigan to
Texas. It was, in many ways, a new beginning for the family. But human
nature, and people's discomfort with others who look different, crosses
geographic lines. In Brenna's new school, children would come up to her and
ask such things as "Why do you look like that?" "Why are your arms like
that?" "Do you know you have a mustache?" Brenna and her mother spent many
hours talking about how Brenna could respond to the other kids' natural
curiosity and discomfort.
"We talked about how Brenna could put the other children at ease, about
why children tend to say the things they do, and how Brenna could help others
see her as she is inside. It's been tough for my daughter, but she keeps on
trying."
One problem Brenna has faced, because of her appearance, is people's
tendency to assume she is in some way retarded.
"I'm not sure why people make that assumption," says Mrs. Nay. "I guess
it's because she has that 'syndrome look'. Whatever the reason people,
especially adults, would often talk down to her. When she was younger,
people would ask, 'Do you go to school?' or use baby talk to communicate to
her. A few years ago, when Brenna was having a procedure done in a
prestigious medical center, the nurse walked in the room and asked my husband
and I, in front of my bright, inquisitive daughter 'Can she understand what I
say?'
"Why do we all make so many assumptions based upon how people look and
why does someone like Brenna make people so uncomfortable? Maybe people will
never be able to get beyond that. Or maybe people just need to be taught
how."
Mrs. Nay has some suggestions for parents, to help teach their children
how to deal with others who look different. They include:
Talk with children before they see someone who looks different or is
disfigured, about how they should act. Help them understand that pointing,
staring and whispering about other people is not only rude - it's extremely
hurtful.
Ask children how they would feel if they were teased, or stared at by other
people because of how they look. Ask them just how they would want other
people to treat them.
Consistently reinforce to children how misleading appearances can be, and how
important it is to judge people according to who they are on the inside.
Today Brenna is excelling in school and has made a number of caring
friends. Several months ago, the Nays were referred to a plastic and
reconstructive surgeon who has previously worked with children suffering from
congenital deformities, and was able to help them attain a much more normal
appearance. Brenna and her parents were overjoyed at the news, and Brenna
began to let herself dream of what life would be like without her facial
deformities. It seemed like a whole new world was opening up to her. Then,
two days before the first scheduled surgery, the Nays learned, as have many
other families in similar situations, that their insurance company would not
approve the procedures, claiming that such surgeries are strictly "cosmetic".
Brenna was emotionally devastated, and so the Nays went into debt to pay for
the initial surgery. They are not sure how they will be able to pay for the
surgeries to come.
UPDATE REGARDING BRENNA NAY
But the fight still continues for other children. Dr. Kenneth Salyer,
Brenna's plastic surgeon who has been deeply involved in the issue of
insurance coverage for children with facial deformities, emphasizes two
crucial points which have an effect on every child and family in this
country. He points out:
Are the deformities theirs or ours?
Brenna Nay and her mother address the issue of insurance coverage
for children's deformities at a congressional briefing on March 20, 2000.
By Dr. Janice Cohn
When Brenna was a very young child, comfortably ensconced in a loving and
supportive family, she had little awareness that she was different from other
children. But as she became older, and went out in public with her family,
things changed.YOU CAN HELP BRENNA AND OTHER CHILDREN LIKE HER
Today, thousands of American children, like Brenna, are born with congenital deformities such
as cleft lip, cleft palate, skin lesions, malformations of the ear, and even profound
craniofacial deformities. Reconstructive surgery is available for these children, but
insurance and managed care companies are obstructing access and refusing to pay for it.
For more information on this issue contact Bill Seward or Kathleen Corcoran at the ASPS at
(847) 228-9900.
Talk with children about extending a hand of friendship to those children who
look different from the norm. Explain what it means to people who have
problems to know they are not alone.
Because of the growing publicity about Brenna Nay's situation, the
family's insurance company recently reversed its original decision to deny
Brenna coverage for her needed plastic surgeries.
We never know when an unborn child -- or a child who is very much alive -
will need this kind of surgery. It is up to all of us to insure that this
treatment is available to every girl and boy who needs it, and that there are
enough competently trained surgeons to provide
JWR contributor Dr. Janice Cohn, a psychotherapist, is Chief of Consultation and Education at the Department of Psychiatry, Newark Beth Israel Medical Center. The author of Raising Compassionate, Courageous Children in a Violent World , she is also in private practice in New York City and Montclair, New Jersey. Send your comments by clicking here.
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