By Patricia McAdams, Staff Writer, Nevus Outreach
An hour to heal
A mother wept as she gratefully shared the burden she had carried from the day her baby was born — the guilt that her child’s nevus was her fault. We were at the 2012 Nevus Outreach Conference in a session that allowed parents to meet informally with adults with a nevus (AWNs) in a small and intimate setting. This session was led by Megan Fields, herself an adult with a nevus.
In fact, this session evolved into one of the most emotional and therapeutic gatherings of the Conference. It allowed people to speak with one another about the first person experience of having a congenital melanocytic nevus (CMN) — something few others would understand.
Both AWNs and parents of children with CMN spoke of how finding Nevus Outreach had changed the quality of their lives. This had occurred not only because of the support and friendship of Nevus Outreach families — literally a lifeline for many — but because each better understood the underlying science of CMN.
Importantly, moms needed to be reassured that there was nothing they had done, or not done, that caused their child to have a nevus, easing the guilt they had placed on themselves —or that family members, surprisingly, were still placing on some of them. Regrettably, we learned that if a baby were born with a medical problem in some cultures, the mom is blamed, the belief being that she must have been a bad person in a previous life.
We all like to believe that people are not intentionally unkind toward those who are different. Unfortunately, some AWNs have had hurtful and even horrific experiences to suggest otherwise. They have been ridiculed, whispered about, even hidden away. One was refused entrance to a bus. When another went to a pool one hot summer’s day, the pool cleared out.
Another AWN was born into a loving family and had a happy childhood, she says. But when she was born, the wife of her parents’ pastor told her mom that she should “throw the baby into the river.”
Another mom cruelly told her daughter, an AWN, “You are ugly. You will never find a husband.”
If one thing came through loud and clear in this session, it was that having the support of one’s family is the most precious gift parents can offer a child. It is a warm hug, a loving cocoon that shelters, nurtures, and empowers a child to grow in resilience and strength and be happy.
“I was almost suicidal,” said one woman. “I didn’t have anyone. I was very envious of anyone who had support from their family, because it’s something I never had.”
But failing a child isn’t always intentional or meant to be cruel. Particularly before the Internet, so little was understood about any rare disorder, including CMN, that parents simply had no words to explain this birthmark. And even loving parents can be at a loss in knowing how to help their child rise above ridicule.
“I needed my parents when I was a child,” says one woman. “I needed them to tell me I was beautiful, but my parents never talked about it or, if they did, they said, ‘the thing on your back.’ I didn’t know it was a nevus. They didn’t know it was a nevus. They didn’t initiate any dialogue about how to cope. I spent most of my 20s depressed and institutionalized and always kept everything hidden.
“I have had a lot of therapy since then, which has been important to me. I had to reestablish myself, accepting who I was. I would never even look at myself before, so that was the first thing I had to do. Then I started wearing shorts and dresses and being okay with grafts that you can see when I wear dresses, but it’s been a long process,” she whispered sadly.
Young parents, in particular, overwhelmed and confused about so many things, asked AWNs for their advice on a range of topics. Loosing sleep especially over making the right decision as to whether or not to remove their child’s nevus, they asked how AWNs felt about the decisions their parents had made in their behalf.
Most AWNs at the Conference had been born before tissue expansion surgery was commonly performed to remove a nevus. If they had surgery at all, it was typically some combination of grafting, dermabrasion, and/or excisions. These procedures often resulted in significant scaring, as well as itching, for some individuals.
Yet, most of these adults recognized that their parents made the only choices they could have made at the time, and they were at peace with those decisions. “Realistically, there’s nothing more they could have done,” said one man.
The general consensus was that each child is unique and the decision to remove or not remove a nevus is a personal one for each family. For some families, the decision to remove a nevus as a baby seems to feel right. For others, it is not to remove the nevus, but to monitor instead and to help their child wear his spots with pride. Still others prefer to allow their child make that decision when the child is older.
In terms of supporting those children, though, one AWN suggested not moving while your child is in school, if at all possible. “If you can keep them with their core groups of friends, that would help a lot.”
One mom thought that was a great idea. She had chosen her little boy’s pre-school carefully so it would filter into a particular high school. “And if the high school is "crappy" when the time comes, it’s okay. We’ll get tutors. Just so he doesn’t get the questions. He doesn’t need a ton of friends, just a couple.”
Blossoming as an adult
One mom remarked to a bubbly AWN at our table what a “social butterfly” she was and asked how she became so confident and outgoing despite having CMN.
The question took her by surprise and, at first, she couldn’t answer. She reached for the tissues that were on the table. Finally, she managed: “Being here is what changed me. The first time I met anyone else with a nevus was four years ago, and it changed everything.”
This woman is now on Facebook and checks in almost every day with her new friends, she says. “The days that I am not on Facebook are days I’m having a down day, because I’m not that busy. This doesn’t happen as much now, though, since I found the group. But I still have a meltdown every few months.”
One AWN suggests that the most important thing you can do for your child is to tell him that he is beautiful every day. “This is healthy brainwashing. The more you say it, the more you believe it. They need to hear it.”
She, too, echoed the importance of staying in the same school and keeping the same core group of friends, if possible. “If you can do those things, he’s going to be so confident. There is no negative he cannot overcome.”
The young woman who grew up without any support from her family first learned about Nevus Outreach and the biennial Conference about seven years ago. “I’ve been trying to get here ever since and I finally made it,” she says, grinning.
“Now I don’t have to think about my family back home,” she adds, happy to have a more loving extended family, who cares. “At Nevus Outreach, we all are brothers and sisters from another mom and dad."