Finding Community in the Midst of Medical Stress: A Conversation with Nevus Outreach

When your baby is born, we imagine those first moments as joyful, filled with love and celebration. But for some families, those first minutes also bring surprise and unexpected choices and decisions. This is the reality for many families whose children are born with congenital melanocytic nevi (CMN) — rare, pigmented birthmarks that can range in size and appearance. Because CMN can’t be detected before birth, many parents first learn about it in the delivery room.

On a recent episode of the Medical Trauma Support Podcast, I spoke with Lauren Isbell, executive director of Nevus Outreach, and Whitney Casal, their director of membership. Both women bring personal perspectives: Lauren as the parent of a daughter with CMN, and Whitney as someone born with CMN herself. In this episode, we talked about the unique challenges CMN families face and the healing power of community.

What Is Congenital Melanocytic Nevi (CMN)?

CMN are pigmented skin lesions, sometimes appearing as large birthmarks, that develop during embryonic growth. They can vary widely in size, color, and texture. Some are small and easily covered, while others may cover significant portions of the body.

Because CMN cannot be diagnosed before birth, many families first encounter the condition in the delivery room. As Lauren describes, it can feel like a “lightning strike” moment — unexpected and overwhelming.

The Shock of Diagnosis and First Medical Decisions

When CMN is discovered, families often face urgent medical decisions. Questions arise immediately:

• Is my child at risk for melanoma?

• Should imaging like an MRI be done to check the brain and spine?

• What treatment options exist, and how soon do we need to decide?

These choices can be especially stressful when parents are still processing the shock of the diagnosis. Even more challenging, medical providers may not always be familiar with CMN, leaving families feeling uncertain and alone.

How Medical Trauma Shows Up for Families

Medical trauma doesn’t only come from invasive procedures. It’s also the emotional weight of unexpected diagnoses, repeated medical appointments, and the social impact of visible differences.

For some, CMN may not be noticeable under clothing. But for others it is visible on the face, drawing stares and comments in public. Families must navigate not only medical uncertainty but also the ongoing stress of being visibly different in a society that often doesn’t know how to respond.

As Lauren shared in this episode, “We’re not just thinking about our children’s physical well-being, we’re thinking about their total well-being.”

The Burden of Medical Choices

One of the hardest aspects of CMN is that there is rarely a single, clear path forward. Families may choose:

• No intervention, simply monitoring the nevus over time.

• Imaging and regular dermatological care for ongoing evaluation.

• Surgical removal, which can require multiple operations over many years.

Each path comes with its own risks and uncertainties. Some families feel relief after pursuing surgery, while others, like Lauren, choose to delay removal until their child can make the decision themselves.

As Whitney noted, “Two people could take exactly the same path and have very different outcomes.” This makes decision-making even more difficult and stressful. It is hard to be the parent making a decision when we don’t know what the outcome will be, it’s one of the hardest parts of being a parent.

Why Community Is Essential for Healing

In the face of so many unknowns, Nevus Outreach provides something powerful: connection with others who understand.

Through private online groups, biennial conferences, and peer support, families can connect with people who have walked similar paths with CMN. Whitney recalls how isolating it was for her parents to raise a child with CMN in the 1990s — and how life-changing it was to finally meet other families at Nevus Outreach events.

Community doesn’t eliminate the hard choices, but it makes them easier to bear. As Lauren shared, “Wherever you land with those choices, you have a community here that’s going to support you.”

The Broader Lens: Medical Trauma Beyond CMN

While CMN is rare, the themes families face are universal in the world of medical trauma:

• Shock at diagnosis

• Urgent, high-stakes decisions

• Uncertainty about long-term outcomes

• The emotional toll of visible or invisible differences

• The power of peer support

These experiences are not limited to CMN. Many families navigating unexpected medical diagnoses encounter the same layers of trauma — and the same healing potential through supportive community.

Moving Forward Together

Whether you’re a parent navigating CMN, another rare condition, or any unexpected medical journey, one of the most powerful steps you can take is to seek community. As Lauren said, “When you have a community that understands the nuances of your condition, you just fare better.”

For families affected by CMN, you can find resources and connection at nevus.org.

And if you’re walking your own path of medical trauma, you are not alone. That’s why I created the Befriend Your Body Community — a space where people can learn, connect, and feel supported as they heal.

Because while hard things are part of being human, none of us were meant to carry them alone.