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Parenting a Child with a Giant Nevus


Stamatiou Family

The Reynolds Family.

By , Staff Writer, Nevus Outreach

Moms and pops at the 2012 Nevus Outreach Conference in Texas likely enjoyed the reflections of Shawn Reynolds, PhD, as he looked back on the birth of his daughter Kalina some five years ago. After trying for several years to have a second child, he and his wife Janet had essentially given up hope. Reluctantly, they gave away all their baby furniture and equipment, saddened that they would never need it again. But four-year old Jenaya was not about to give up. She still hoped for a baby — a baby sister — and decided to pray.

Naturally, that very month, they learned they were pregnant. “This can’t be right,” they thought, as they took one pregnancy test after another. But the surprise of the unexpected pregnancy was nothing compared to the surprise that arrived when Kalina entered the world nine months later — with a giant congenital melanocytic nevus (CMN).

“Wow!” her doctor said. “I’ve never seen that before.”

Along with Janet, who works as an occupational therapist with children with major challenges like cerebral palsy and spinal bifida, Reynolds was well aware of the range of challenges parents may face when a child is born.

“But what was a nevus?” they asked each other. “It was like nothing we might have been prepared for.”

Reynolds well remembers those first 48 hours in particular. There are so many emotions — joy, confusion, curiosity, even indifference — noting an otherwise healthy baby.

Do we worry about this? Or ignore it? And guilt. Did we do anything to make this occur? There is no data to support this theory, but parents don’t know that, at first.

Parents go through various stages of understanding, Reynolds says, and, for some this includes grief and sadness, which we can experience in different ways. Grief can include denial, as well as anger. Ultimately, one hopes for acceptance and a healthy response.

Despite the emotional roller coaster of those first couple of days as Reynolds and his wife tried to wrap their minds around life with a nevus, one thing became clear to Reynolds: “The magnitude of a problem like this is directly related to parents’ perception of the magnitude of the problem.

“Is this birthmark a defect?” he asks. “Or is it a gift?” Then, day-by-day, over the weeks ahead, he grew to see it as a gift, although an unusually wrapped gift to him, as well as to his daughter.

“I am interpreting this as a blessing,” he says.

Reynolds was invited to speak to the Nevus Outreach Conference to share some guiding principles that he has learned from his professional background as a clinical child psychologist. He spends his days as a team leader for about 15 child psychologists at the Glenrose Rehabilitation Hospital in Edmonton, Alberta, Canada.

A healthy response

So what is a healthy response to CMN? How do we become effective parents and, hopefully, foster resilience in a child who comes into the world with a nevus?

Reynolds suggests that the key to a healthy response is simply being active — not passive — and loving your child.

“Coping with faith and friends, getting professional help if needed, and seeking information you might find at an international conference like this one is the best approach. And since you are here now, you’re probably already doing that,” he says. “This is where you learn how to handle these challenges.

“The love from caregivers and family members is especially critical,” he adds. “This often shapes how children believe they should be treated. And when children are treated well, they become confident. Self-confidence is related to parental love.”

Parents need to ask themselves: How big of an issue is this nevus for me? What does having a nevus tell you about my child’s character? About her soul?

“Do we transmit shame because of this?” Reynolds asks. “Kids will get different messages from the community and we can’t control that. What we can control is our response.”

A teaching moment

Reynolds knows there may be hurtful experiences along the way. Though these are tough for any parent to take, they also serve as an opportunity for your child to learn that some things are not perfect. Through these experiences, parents get to share important life lessons, though these may come sooner, perhaps, than otherwise.

Understand, for example, that when someone sees another person who looks very different, they might look at that person twice. That’s just the way our minds work. It catches our attention simply because it’s unusual.

“If I were to see a pink tree, for example, I’m probably going to keep looking at it — not because I think something badly of it — but just because it’s unusual and it gets my attention. We expect to be seeing things a certain way. It’s simply a surprise, he says. It’s not making a negative interpretation.”

But kids are more resilient than their height might suggest, Reynolds points out. In fact, Reynolds observed this first hand in one of the Conference sessions he led.

“In the teens group, we talked about issues related to having a large nevus. The conversation balanced really well between challenges that go along with a nevus and the strength in character that occurs as a result. One thing they pointed out is that having a nevus was a good ‘jerk detector,’ which I thought was really powerful. The kids were willing to talk about difficulties, but this really seemed to be a group that was coping well — not just with their nevus — but with life in general.

“It made me wonder about the resiliency that is built in for children with a nevus, when they get good support from their parents.

“Essentially, every life event has positives and negatives that go along with it,” Reynolds says. “The important thing is making sense of what you can, and letting go of what you can’t.

“Quite simply, Kalina is our blessing and I’m good with that.”

Resources:

  • Optimistic child — by Martin Seligman, PhD
  • Building resilience in children and teens — by Kenneth Ginsburg, MD

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