On Solid Ground: How Mom Caitlyn Found Her Footing After Diagnosis

When Caitlyn Neuendorf gave birth to her daughter Reece, her new mom instincts told her something wasn’t quite right. “When she was first born, I noticed it immediately. I just knew something was wrong with her leg,” Caitlyn recalled. In the swirl of labor and delivery, her questions were initially brushed aside. “The doctors said it was nothing, just a beauty mark or maybe some bruising from a fast delivery.”

More doctors weighed in — this time, with a sense of urgency. “Suddenly, it went from ‘she’s fine’ to ‘this is very serious, you need to see a specialist right away,’” said Caitlyn. Fear gripped her heart as they ruled out life-threatening conditions like spina bifida and warned of an uncertain future.

Reece was eventually diagnosed with Giant Congenital Melanocytic Nevi (GCMN) — an incredibly rare condition, occurring in roughly 1 in 500,000 births. Reece has two large nevi — one covering her entire lower right leg and another in the bathing trunk area. Beyond its visible impact, GCMN can be accompanied by a potentially life-threatening neurological complication: neurocutaneous melanocytosis (NCM). Reece had to undergo a nerve-wracking MRI to assess the risk. Thankfully, the results were clear, bringing much-needed relief to her family during an incredibly difficult and uncertain time.

Adding to the stress, Caitlyn and her husband had just moved to a brand-new community three weeks before Reece’s birth. “We had no support system, didn’t know anyone — it was so hard,” she shared. “I was in full fight-or-flight mode for months. I don’t even know how I functioned through that brain fog.”

For Caitlyn, navigating postpartum anxiety while suddenly becoming a fierce medical advocate for her daughter was overwhelming. Parents facing a rare diagnosis like GCMN often experience intense emotional strain — a confusing mix of grief, fear, guilt, and helplessness — compounded by the pressure of making urgent medical decisions for their child. The lack of clear answers, uncertainty about the future, and constant vigilance can take a heavy toll on mental health.

“Our pediatrician had never seen anything like it — he sent us for tests that didn’t make a lot of sense. It wasn’t until we met with a specialist — a pediatric dermatologist — when Reece was about three and a half weeks old, that I could finally breathe.” That moment brought a glimmer of clarity, hope, and calm in what had been a chaotic and frightening start.

One of the hardest parts for Caitlyn was the sense of isolation. “At first, I didn’t get

involved in the CMN community — I wasn’t ready. The few times I did access Facebook groups, it actually fed my postpartum anxiety because I’d read stories about kids with melanoma or other complications at 2 AM. It was too much at that time.” She now encourages other parents walking a similar path to honor where they are emotionally. “Finding a supportive community is so helpful — but only when you’re in a space to accept it. And finding people who have really walked through this is key.”

Today, Caitlyn and Reece’s story reminds us all of the resilience parents can find in the face of the unknown — and how even in the scariest times, small moments of support and understanding can bring much-needed light. Caitlyn’s advice to other parents entering this journey: “You’re not alone. Be kind to yourself. Seek out community — but when you’re ready. And trust that little by little, you will find your footing.”

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