L'Chaim

Jewish World Review June 23, 2000/ 20 Sivan, 5760

Brenna Nay and her mother address the issue of insurance coverage
for children's deformities at a congressional briefing on March 20, 2000.
Are the deformities theirs or ours?


By Dr. Janice Cohn


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.

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.

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:

  • Form a coalition in support of this issue by contacting medical specialty organizations; patient advocacy organizations; facial reconstruction foundations and support groups for cleft lip and cleft palate, trauma, burn, etc.

  • Write letters to your congressional legislators urging them to support children's deformities legislation based on language from the Treatment of Children's Deformities Act: Any hospital, health, or medical expense insurance policy or health care service contract that provides medical or surgical benefits, which is delivered, issued or renewed in ___________ [United States or other appropriate jurisdiction] shall include coverage for all outpatient and inpatient diagnosis and treatment of a minor child's congenital or developmental deformity, disease of injury due to accident, and trauma.

  • Write or call your congressional representatives in Washington, DC alerting them to this problem. (If you do not know who your representatives are, call the Capitol Hill switchboard at (202) 224-3121.)

  • Write editorial articles for your local newspapers on this issue.

  • Investigate whether your own insurance carrier covers procedures for children's deformities.

  • Submit employee newsletter articles on this subject to your employer.

For more information on this issue contact Bill Seward or Kathleen Corcoran at the ASPS at (847) 228-9900.

--- J. C.

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.

"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 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.

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
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.

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:

  • New technologies now make it possible to correct - or begin to correct - serious facial deformities in children shortly after birth. Until recently, many of these children had to wait until their jaw was fully formed, when they were approximately fifteen years of age, to receive treatment. This can save children and their families literally years of physical and emotional turmoil - something that is impossible to measure in dollars and cents.

  • Just at the time that exciting new technologies are making what has been impossible in the past, possible, we as a society are facing a shortage of specially trained plastic surgeons who will be able to perform these minor miracles. This is because when such surgeries are not covered by insurance, surgeons cannot survive financially. Thus, many of the "best and brightest" in the field, who initially showed a keen interest in craniofacial surgery, are now deciding to specialize in cosmetic surgery.

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 it.



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.


Up

06/14/00: Parental love and helping behavior
05/23/00: Teaching Children Charity
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01/27/00: Parental discipline affects child's compassion

© 2000 Dr. Janice Cohn. This column first appeared, in a different version, in The Washington Times