©Nevus Network News

The Congenital Nevus Support Group Newsletter

PO Box 305 West Salem, OH 44287 (419) 853-4525 (405) 377-3403

web site: http://www.nevusnetwork.org email: info@nevusnetwork.org

 

Number 6 Se parle francais. Se habla espanol. Sprechen sie deutsch. Fall, 1993

Family Copes Despite Struggles  

Adolescent Faces Peers with Help of Friends

Behind Every Dark Cloud is a Silver Lining

Nevus Research  

Editor's Corner

 

Family Copes Despite Struggles

 

Editors' Note: Randi is the mother of 2 1/2 year old Jacob, who has a giant congenital ''shirt" nevus with many satellite lesions. Jacobís fraternal twin brother has normal skin.

Mothers of twins kept telling me that when twins are born, it is extremely exciting in the delivery room. The room buzzes with all the activity: 2 bassinets, 2 of this, 2 of that. However, the memories of the night our twins were born are far from exciting. As I was lying there in the middle of a cesarean section with my guts piled on top of me the room suddenly became very still. My husband told me. ''Something is wrong." "Larry, go see what's wrong,'' I replied. "You are my eyes and feet since I can't move." But the pediatrician motioned him away.

Finally word arrived that there was some sort of birthmark on one twin. The obstetrician tried to make light of the situation by telling us that his son was born with a birthmark which disappeared as he got older. They quickly showed baby Jacob to me. I could hardly hold him because I was shaking as a result of changing hormones or the anesthesia or something. When the ambulance came to transfer Jacob to a larger hospital, I was helplessly trembling on the operating room table. Larry met the baby at the other hospital and didnít for one minute then or now stop nurturing him. Each time the nurse came in that night to check me, I hoped I was dreaming. I was relieved when the nurse gave me the telephone number of the intensive care unit at the larger hospital so that I could call and check on Jacob. It was the same relief I felt when I was released from my hospital with one twin and was finally able to visit and nurse Jacob for the first time at the other hospital.

The next morning the pediatrician explained that all the doctors went home the previous night and studied their medical books to determine what Jacob had. He reported that the baby probably would not live to come home. If he did, he would probably only live for 3 or 4 months. That same day, the doctors at the transfer hospital told my husband that everything would be fine. One doctor even said he had a patient with similar birthmarks and they all disappeared. As it turned out, all of them were wrong. (Note: there are several documented cases of a giant nevus spontaneously regressing. See our lists of medical journal articles for the references.) There were so many conflicting opinions ....so many unknowns...

We had tried to prepare our 2 older children for the day we finally brought Jacob home. When we walked in the house, our 3 1/2-year-old wanted to know why Jacob had spots. Our 6-year-old was afraid to touch Jacobís hand where he has a large satellite mole. We are still dealing with new situations every day. The 6-year-old wants to take Jacob's twin to school for show-and-tell but would rather not bring Jacob. The 3 1 /2 year-old wishes that Jacob never had surgery so that he could sometimes hit him in the head. But when I worry about these issues, I try to remember how happy we are that he is thriving. I don't know which is harder: the psychological issues or the physical demands we have gone through. In the beginning we were numb, so we made it through the development of hydrocephalus (water on the brain) and seizures and the 9 operations until the shunt to drain water from the brain was placed properly. My husband and I were each busy wondering what it was we did to make Jacob like this. We are not selfish, ugly, dishonest, irresponsible. At one point Larry was sure it was because he threw away a chain letter he received. I was sure it was because I had dieted before I was pregnant with the twins. Now I smile when I realize that I forget Jacob is different until I am having dinner at McDonald's and I see people whispering or I am standing in the grocery check-out and catch someone staring. Or am I imagining it? When I take Jacob to a new school program, I explain to all the mothers that he has a skin condition and it is not contagious. When reacting to blunt comments about Jacobís condition, my goal is to remember I am his role model. He learns from every part of my reaction.

Jacob is now 2 1/2 years old. As I write this, I picture his head tilting as he gives me his special smile. But that nightmare of the delivery will never be erased nor will my constant wondering about the future. I often hope that somehow I can help other families the night their child is born with a giant nevus.

We have had quite a few hurdles to jump since Jacob's birth. And I think these hurdles are nothing compared to dealing with the issues once Jacob realizes that his skin is different. My father-in-law reminded us that during the summer, Jacob will want to take his shirt off at the pool like all the other little boys. Larry strongly felt that Jacob should be allowed to take off his shirt. Otherwise, we would be teaching him to hide and be ashamed. I felt that we should keep his skin covered to protect him from the sun. That night I could not sleep. I faced the fact that I was scared to let Jacob take his shirt off at the pool. I realized I felt embarrassed about how others would react and was really using the sun as an excuse to cover him up to save me from embarrassment. I hated myself for these feelings. The next day, Larry reminded me that it's only human to think this way and that my actions are more important than my thoughts. I asked our pediatrician which he thought was worse: teaching Jacob to feel ashamed by hiding his skin or letting others stare and perhaps ridicule him. His answer was strictly medical. He felt the skin should be protected from sunlight. At the time, I was relieved to get the answer I secretly wanted, teaching him to hide and be ashamed. Later on, we decided that during the heat of the day, Jacob needs to learn to protect his skin. However, when the sun goes down, he is free to take his shirt off. If other people cannot deal with this, it is their loss.

Recently, my 6-year-old was afraid to swim in a hotel pool because a boy with disfigured arms was swimming. The boy was tossing a ball in the pool right along with his brothers. Rather than feeling sorry for the boyís father, I admired him for giving his son such confidence. I explained to my son that the same thing would not happen to his arms just like Jacob's birthmarks would not rub off on anyone. I learned that in dealing with similar situations, it was important not to make either the child looking at Jacob's birthmarks, or Jacob, feel bad.

Next week Jacob is scheduled to have a red, raw spot from his neck removed. Our dermatologist decided a month ago that the spot looked troublesome The plastic surgeon also agreed the spot should come off. Larry and I left the office with that confused feeling once again. Why didn't the doctors think the spot was troublesome 6 months ago when we first pointed it out? Are their other dangerous spots? Should we be more aggressive? Should we be less aggressive and not put Jacob through the risk of anesthesia? I know now that no one really knows the "right'' answer. Soon after Jacob was born, we had a meeting with a plastic surgeon who was willing to take Jacob's case. Later on, we learned that this doctor had no experience at all with giant nevi. Living near New York City gives us access to some of the best doctors in the country. Nonetheless, we still need to filter all the information and proceed in a manner that suits Jacob and us best. But that question of doing the right thing always lingers. For the moment we are waiting and hoping that one day surgical technology will be able to help Jacob. When Jacob was very young, we took him to a dermatology conference at a major university. About 10 doctors walked in the room and discussed his case. Their suggestion was that we wait to do any extensive surgery to see how Jacob develops. We had a feeling that they felt he might not develop normally. Now that he is 2 1/2 and developing beautifully, we still plan to monitor his skin for cancer and wait on further treatment. One of the hardest parts of the experience has been the realization that even with the most brilliant doctors, there are still so many unknowns. Sometimes I find myself dwelling on Jacob's condition. But as BJ of the Nevus Network said to me the first night I spoke to her and as I say each day, "One day at a time.'' I remind myself how lucky I am. My goal is to give Jacob as normal a life as possible. --Randi C., Chappaqua, NY (Editor's note: Jacob had several shunt revisions for his hydrocephalus and he is doing fine in 2004.)

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 Adolescent Faces Peers with the Help of Friends

 Editorís Note: Inga has a giant congenital "blouse" nevus with many satellites.

  I am 14 years old and I have a giant nevus which runs along my neck, upper arms, and shoulders going down to my lower back. I'm starting high school this fall, and I'm very nervous about facing the people who have teased me in the past. One boy I remember who was one grade higher than me - one day I wore a skirt and he said he didn't like looking at my legs and he also said I should wear pants every day to cover them up. I was shocked. About a week after that he came up to me and asked me if I could take my "spots" off. I wanted to slug him in the face! However, we were on school grounds and I didn't want to get in trouble. Now I have to face him and all the others who used to tease me.

In the hallways of my old school, kids would try to avoid touching me because they thought it was contagious or it would rub off on them. When I think of that now, I laugh. It's tough going through school with moles and I just hope I can be strong enough to get through the rest of it. I've heard that a few people die of cancer with this. I don't want to die young. I want to live longer. But we can't make the decision of who is going to live longer. I just wish we could.

BJ says it gets lots better after high school. I hope that's true. My parents try to understand what it's like, but they don't. They don't know what it's like to walk down the halls with kids teasing or trying to avoid you. I felt happy/joyous/ecstatic - all of the above - when I read the Nevus Network Newsletters. There were others like me!

My father hasn't talked to my dermatologist lately since my last appointment. Inside my big mole on my back is another mole, a big black-blue mole. There is another tiny, black-blue mole on my other shoulder. The big one has been tested (they cut a small piece out of it) for something. I think it was for cancer. They measure it every time I go there.

I 've been dumped twice. One guy who never called me, the other said trees were non-living. I'm not stupid - both dumped me because they didn't want to be seen around me. I hope there will be a guy in my future. My friends help me a lot. I'm very grateful to have them. They let me know that there are people who care about me!-- Inga F., Brighton, MI (Editor's note: In 2004, Inga is now 25 and making her own way in life!)

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Behind Every Dark Cloud is a Silver Lining

 Editorsí Note: BJ is a 37-year-old with a giant bathing trunk nevus and many satellites.

  Reading Jacob's and Inga's stories brought back many memories for me, memories of stares, of name-calling, of being left out. I was a teenager in the mini-skirt and hot-pants era and my bathing trunk nevus goes from my shoulder blades down to my knees. But those memories are somewhat faded now from my vantage point of 37 happy years. 90% of the ridicule and ostracism was over by the time I graduated from high school. And I survived!! Of course, I still wish homeschooling existed back then. In many ways, though, having a giant nevus was a precious gift because it allowed me to develop courage and fortitude far beyond the average person. Those of us with giant nevi are special, chosen from among half a million.... Having survived the taunts of my classmates at age 13, I could backpack alone halfway around the world at age 19! My giant nevus enabled me to determine what my personal priorities in life were: doing good and helping others. It has been said that success is living oneís life in oneís own way. Because I was "blessed" with a giant nevus, I am able to do just that. I have a wonderful career that I work at on my own terms and I have a fantastic relationship with my fiance. Because of my giant nevus, I have been mercifully released from materialism and greed, so common in all societies through the centuries. I am always taken aback at people I meet who fritter their lives away "keeping up with the Joneses." Itís so obvious to me that all that stuff doesnít matter one whit, and yet itís completely beyond their comprehension. The average woman dreads aging. Yet I await each birthday with happy anticipation because of the "gift" of my giant nevus. Instead I dread not aging. I hope to live to be 100 years old, but I may not, so I need to make use of each precious day I have. Who would ever know that a giant nevus, something that could possibly be an affliction in childhood, would turn into such a wonderful advantage in adulthood! Behind every dark cloud, there really is a silver lining..... --BJ, Arlington, VA

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 Nevus Research

  Several doctors are interested in tissue samples from congenital nevi for research purposes. If you are interested in donating tissue, please contact us for details.

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Editorsí Corner

  We still need about $400 to copy our literature for our exhibit table at the American Academy of Dermatology annual meeting on Dec. 5-8, 1993. Please keep your donations coming in! We need to have plenty of copies of our literature to hand out to make this exhibit a success! Tired of receiving unwanted items for the upcoming Holidays? Ask friends and relatives to send in a donation in your name payable to the Nevus Network and we will mail them and you a Holiday card of acknowledgment. Only 15 people have sent in their permission slips for penpals. Being on our mailing list does not constitute permission for inclusion in the penpal list. If you want penpals, you must send in your signed permission slip. Kelly H. and her daughter Jilly were recently featured in the Fall, 1993 edition of Healthy Kids, a free magazine you can pick up when you visit your pediatrician! Many thanks to Randi C. and Elise L. for their donations. And a very big thank-you to Loretta G., who became a Benefactor of the Nevus Network with her generous donation. Strapped for cash? What about donating some stamps? $2.90 worth of stamps will enable us to send our information to 10 more people! Whenever you write the Nevus Network for information, please include a large, self-addressed, stamped envelope with your request. Additionally we request that you send us close-up photos of you or your child so that we may match contacts. We have also started a picture album for members use only located in West Salem, OH. If we ourselves canít look at and exchange pictures of our own skin, how can we expect the world to treat us and our skin positively? Congratulations to "Doodles" for being selected as our first "poster child" and an even bigger thank you to "Doodle's" parents!

One last bit of good news: a major study from the UCLA Medical School showed that melanoma patients who regularly attended a support group had one-third the death rate of equally ill patients who didnít participate in a support group. Group members had better immune function, and it was felt that this could improve survival. A previous study with breast cancer patients had shown similar results. Now wouldnít it be great if someone did a study to see if being actively involved in a support group such as ours helped to prevent melanoma in the first place?? Keep your comments, stories, and donations coming in! Remember itís easy to join our group. Just send your name, address, telephone, e-mail address, and the name, birthdate, and brief medical description of the person with the nevus to us. All identifying information is held in strict confidence. There are no dues or fees to join! Of course, donations are gratefully accepted. --The Editors BJ and Kelly

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 The opinions expressed in the ©Nevus Network News are those of the writers and do not necessarily reflect the views of the Nevus Network or of the medical community at large. For all medical advice, please consult your own personal physician. This newsletter may be photocopied without permission for patient/support group use only.

©1993 Nevus Network. Reprinted 2004.