The Congenital Nevus Support Group
PO Box 305 West Salem, OH 44287 (419) 853-4525 (405) 377-3403
web site: http://www.nevusnetwork.org email: firstname.lastname@example.org
Number 7 Se parle francais. Se habla espanol. Sprechen sie deutsch. Summer, 1994
Adult Faces Difficult Surgical Decision
New Father Struggles with Physicians and Treatment
Nevus Network Goal: Every Family Notified within 48 Hours
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Adult Faces Difficult Surgical Decision
Editors’ Note: Connie, age 42, has a giant congenital nevus of her back.
Last summer I accompanied my husband on a business trip to Arlington, Virginia. While there I had the privilege of meeting BJ face to face. I am 42 years old and that was the first time I had ever met anyone else with a giant congenital nevus. Birth defects were hidden as much as possible in the past. I was born in 1952 in a small rural town in Virginia. Of course, no physician there had ever seen anything like this before, and I was a frightening sight to my parents I’m sure. My mom was not allowed to see me for several days after birth while they brought in doctors from Johns Hopkins and the University of Virginia. The medical consensus back then in 1952 was ‘‘do not touch it surgically unless you have to.’’ They felt that I could decide whether or not to have it excised for cosmetic reasons later on when I was older. Most doctors at that time did not feel nevi were dangerous. This was before sporadic reports of melanoma with nevi began to appear.
I grew up quite normally with a great mother who protected me and made many of my clothes, including majorette outfits. My nevus is shaped like a triangle on my back from my waist to above the bra strap and from side to side. I also have a few satellites. Normal swim suits were out of the question for me at that time. I remember when I was very young, probably pre-school, being around lots of mothers who wanted to see my back. I was bent over my baby-sitter’s lap a lot to show it off. My first real difficulty came in junior high with the group showers after gym. Everyone asked, ‘‘What happened to your back? Have you been burned?’’ So I would just say, ‘‘I was born with it. It’s a birthmark.’’ That was that. They got used to it and eventually the questions stopped. The next difficult time came after my future husband proposed to me. I didn’t know if he knew I had this mark, and I was really afraid of rejection. So sitting at his parents’ home, I decided to show him my back before we made a final commitment for marriage. He never made a big deal out of it at all. He said, ‘‘I knew something was there because I had seen it through a white blouse.’’ It had never dawned on me that it could be seen through my clothes. He accepted me, nevus and all. We have now been married for over 20 years!
When I was a child, doctors back home never made any remarks about my birthmark when I had checkups. So I was not alarmed about it ever causing me health problems until I was in my twenties in nursing school. At that time I had minor surgery to remove a cyst. Post-op I overheard the surgeon talking to my mother, and he was more concerned about my back than he was the cyst. He told us that the nevus could turn into cancer. At that age, I was not alarmed as I knew from my nursing studies that most skin cancer is very easy to cure. He did tell me that I should have a doctor check it for suspicious areas occasionally. In the meantime, I finished school and had five beautiful children. None of them has a nevus. I hope all of you find that encouraging! At some point in each of their lives, they realize something is wrong with Mommy’s back, but I have been able to explain it to them and they are very accepting. I use this as a good teaching tool for my children. I tell them that everyone is born special or has something about themselves they may or may not like. I feel that God created me with this mark and He enables me to deal with it at each stage of my life.
In 1985 I saw a dermatologist about some moles on my face. While I was there, I asked him to check my back. He went into outer space when he saw it, and, in turn, sent me into outer space. I was out there for about two years agonizing over whether to have surgery or not. Before this, no one had mentioned that my birthmark could turn into malignant melanoma. The removal would involve several operations and general anesthesia. I would be wearing skin expanders as an adult, trying to raise five kids and working all at the same time. In agonizing over this decision, I knew it had to be made between me and the Lord. I went against the doctors’ opinions and decided not to have it removed. To this date, I have not regretted my decision. And I pray that whatever circumstances I have to face in the future, I will be prepared for. Later on through the Nevus Network, I learned that it is possible to develop brain melanoma regardless of whether or not a nevus of the skin is removed. My family has been very interested in my finding someone else who has a birthmark like mine. There have been times when I thought I was the only person in the world. Thanks for letting me share this with all of you!--Connie C., Roanoke, VA
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New Father Struggles with Physicians & Treatment
Editors’ Note: Doug is the father of 22-month-old Molly, who has a giant bathing trunk nevus with many satellites.
After seeing two arms and two legs on the 12-inch ultrasound screen, we thought all of our fears were laid to rest. Our child had all his or her parts and we felt that nothing else could go wrong. That was before we heard of congenital nevus....
Our daughter Molly was born with a large bathing trunk nevus and medium-sized satellite patches randomly placed over the rest of her body, including several on her face. She couldn’t be more beautiful! Thank God she inherited her mother’s good looks and my appetite (had she gotten her looks from me, the nevus would have been the least of her problems). I have never seen a happier little girl. Her attitude will turn out to be a great asset in handling the nevus and its treatment. So far she has had phenol chemical peels of her upper chest and of several facial nevi. She has also had excision of several other smaller facial nevi. When Molly was first born, none of the doctors could tell us what had happened or what that peculiar tint to her skin was. All of the doctors and nurses in the delivery room went about their business as if there were nothing wrong so I tried to adopt their attitude. I thought if the doctors weren’t worried, then maybe that stuff just wipes off. ‘‘Yeah, that’s it,’’ I thought to myself. ‘‘All babies are born with that stuff on them.....’’ Those were the pathetic ramblings of a birthing-room rookie.
Once we discovered that there was indeed a problem with our new daughter’s skin, our next step was to find someone who could tell us what it was, what caused it, and why a capsule of Tylenol costs seven bucks. I did not understand at the time how three doctors could look at something and still not have a definitive answer for us. This was before I had any inkling as to how rare a problem we were dealing with. Molly was born right in the middle of Labor Day weekend so it was difficult to call in a dermatologist. Most of the doctors called by the hospital weren’t home. After several hours which actually seemed like days to me, a dermatologist did see Molly and came back with the diagnosis of giant congenital nevus. (Editors’ note: Stable patients with a giant nevus would generally be seen by a consulting physician sometime within a 48-hour time period.) I began my research as soon as we returned home from the hospital, calling several plastic surgeons and gaining little ground. It was then that I decided to go to the Michigan State University library and look up some facts for myself. The books were helpful. I looked at many from a century ago up to the most recent cutting-edge technology. I finally knew what we were dealing with and what type of doctor to look for. We started with a plastic surgeon in Lansing, then Ann Arbor, then Cleveland, then Detroit, and finally back again to Lansing. Before this happened, I thought that all doctors went to school and were taught the same things, but this was obviously not true. I did not realize that medicine is such an inexact science and that there are so many unknowns, especially with a rare skin condition like a giant nevus. (Note: NORD lists over 5,000 rare diseases, and their lists increase annually.) We received several different alternatives from several different plastic surgeons. Some of them, quite frankly, almost seemed to be quacks. I was amazed by the brilliance of many others, including the one we finally chose to do the work on our daughter. We trust him, and that is the most important thing.
My goal in writing this article is not to advocate one form of treatment for congenital nevus over another. I can only offer encouragement to any of you going through the same thing as my family and I. Please take the time to see a number of doctors and carefully choose the option that you think is best. Educate yourself. Your child might have to live the next eighty-some years with the consequences of your decision.--Doug P., Lansing, MI
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Issue Emphasizes Nevus Network Goal:
Parents Notified of Us Within 48 Hours of Birth
Editors’ Corner: BJ, age 38, has a giant bathing trunk nevus.
Reading Doug’s and Connie’s stories, I am reminded of how much progress has been made. After I was born, I was taken to the nursery and my mother was not permitted to see me for several days. The doctors wanted to prevent her from going into ‘‘shock’’ upon seeing me. Understandably, none of the doctors in our rural Ohio area knew exactly what I had, so they referred me to Case Western Reserve University in Cleveland. When I was 7 days old, my parents took me to University Hospitals of Cleveland for diagnostic admission and biopsy. The trip took them about 3 hours-time one-way in those days before interstates! My parents were told of my diagnosis and the chance of cancer about 10 days after birth. I am sure those 10 days seemed endless to them! We have come a long way since then, but we still have a long way to go. One of our group’s goals is that a newborn with a giant nevus is diagnosed and the parents given our information within 48 hours of birth!--BJ, Arlington, VA
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Just send your name, address, phone, e-mail address, and name, birthdate, and brief medical description of the person with the nevus to the Nevus Network, PO Box 305, West Salem, OH 44287 419-853-4525 or 405-377-3403 website: www.nevusnetwork.org e-mail address: email@example.com All personal information held in strict confidence. If you would like penpals, please sign permission for your information to be given to others. There are no dues or fees to join, as we are a private, voluntary charity. However, donations are gratefully accepted! Please make checks payable to the Nevus Network.
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The Nevus Network has been busy! The Midwest Regional members held a get-together at Linda O.’s home in October, 1993. It was the largest meeting of families with giant nevi ever before in the USA! Many thanks to Linda for her hospitality. Kelly P. has also held several get-togethers at her home in Lansing for the Michigan members. Our exhibit at the American Academy of Dermatology in Washington, DC was a great success! We gave copies of our literature to over 3,000 dermatologists and we received 10 new members from referrals. A big thank-you to Randi C. and Doug & Kelly P. for coming from out-of-town to help BJ staff the booth. Many, many others contributed donations of money or copies for the booth and for postage. Among those donating are the following: Kelly H., Edna P, Jo H., Tony F., Paulette M., Kelly P., Karla H., BJ, Julie P., Sue C., Anne T., Connie C., Nell C., Sue E., Mary Beth S., Randi C., Cecile T., Brenda B., Natalie P., Jim E., Glenn L., and Cindy C. It was a great team effort! We even have some copies left over. If anyone would like extras, please tell us! We also have back copies of our 6 previous newsletters. Please enclose $5 in cash or stamps and a large self-addressed envelope with your request for back newsletter copies.
Karla H. had a Letter to the Editor published about our group in the February, 1994 edition of Parents magazine. We got 75 new members who responded to that letter! This boosted our membership to over 200, our biggest single membership jump ever, which is great for a group that started 4 years ago with just 2 members. Congratulations, Karla!! Donna S. had a Mother’s Day article published in the Buffalo News about her daughter Harper Leigh which also mentioned our group. A big thank-you to Donna! Anyone else want to try their hand at letter-writing or articles? There are still about 400 people out there in the USA who don’t know about our group! Our first penpal listings are finally available! Anyone wishing to receive penpals MUST send in the completed permission form.
Several of you have asked how we can help encourage medical research on nevi. We have mentioned several ways in previous newsletters. Another way each of us can help individually is to make sure that any family member with a giant nevus has an autopsy performed after death. An autopsy is an examination of the body of a person who has died. The body is not damaged in any way for a funeral. The autopsy provides valuable information to help doctors save the lives of others. For example, Legionnaire’s Disease was discovered through autopsies. Perhaps autopsies of those with giant nevi will help doctors find out more about neurocutaneous melanosis. In other news from the world of medicine, doctors are trying to duplicate the healing properties of very young fetuses, who generally heal without scarring, in human beings after birth. Wouldn’t that be wonderful for all of us with all our tender scars!
And last of all, some thoughts about health care reform. A successful health care system must provide: (1) high quality care (2) affordability and (3) universal availability (not universal coverage, as that is an impossibility) without rationing. The Medical Savings Account plan will do all three. The USA has had the highest quality health care in the world for the last 50 years. Some experts believe this high quality may drop with most of the other plans under consideration. With many of these other plans, it would be difficult if not impossible for patients to obtain care outside a limited geographic area. Universal medical coverage is actually impossible to provide. This is because demand for medical care is infinite and resources are limited and therefore government rationing must occur. However, those of us with rare disorders such as giant nevi, do need universal availability, including the option of traveling anywhere in the USA for medical treatment or even abroad if the quality declines here. Please write your elected officials and let them know your own personal views! Have a safe & happy summer! Find some shade and remember your sunscreen! --The Editors - BJ and Kelly
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The opinions expressed in the Nevus Network Newsletter 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. ©1994 Nevus Network. Reprinted 2004.