Weston's Journey: A Miracle Among Miracles

I never quite know how far back to start telling Weston’s story.  

He was a miracle to begin with. We found out we were expecting our third child in March 2022. I thought the covid that we just barely survived was the cause of feeling so fatigued and ill. It was actually, quite a shock, as I had very little chance of conceiving again, and a complete hysterectomy was in my future due to my own medical issues. 

At the time, our family was stationed at Camp Lejeune in North Carolina. Almost halfway through the pregnancy, we had to move to Monterey, California so that my husband, Nathan, could attend the prestigious Naval Postgraduate School to earn his 2nd master’s degree. At this point, we are professionals at moving cross-country. We quickly settled in, and I tried my best to deal with healthcare offered locally. I was unable to secure care until 30 weeks when I started developing fainting spells. 

 The OBGYN assured me Weston was fine-but since I was high risk, I got to see his sweet little profile often through ultrasound. At 33 weeks, I remember the ultrasound technician joking with me that I must have heartburn, because he could see Weston’s long hair floating in the images. I smile when I think of that memory, knowing what I didn’t know then - that the hair we saw wasn’t just on his scalp, but also on his forehead.  

I was induced at 39 weeks exactly. We had no family in the area, so we asked my mother-in-law, Ellen, to come and stay a week with us so she could help with our two older children, Harley and Ryker. My husband Nathan and I welcomed little Weston on September 24th, 2022, after a very long and difficult labor. Instead of congratulations filling the air, I was placed in a panic as I could hear whispering around me, then louder comments… “What is that all over him?” “I've never seen that before in 20 years of nursing”! Everyone in the room was baffled by Weston’s appearance and didn’t remotely try to hide their expressions. I could barely see him, my eyes puffy from days of labor, but I could feel his little body on top of my chest. He felt perfect in my arms. 

“Don’t freak out, but I’m going to press this big button. It’s going to call down the NICU team”. 

They took Weston off my chest; I could hear everyone scrambling in the room to attend to him and to me -as I was having after birth complications. Our room finally settled down after 10 minutes, as our doctor went out into the hall to consult with other doctors. She walked back in and exclaimed, “We think he has Mongolian spots”. His birthmarks did have a blue hue to them, but the other characteristics of his birthmarks did not fit the diagnosis.  

The NICU doctor walked in with a calmer and more compassionate demeanor. “Your son has congenital melanocytic Nevus, or CMN”. She placed some papers in front of us and printed off the Nevus Outreach website. She gave us a minute to soak in the diagnosis before she told us, “You are going to need to get him an MRI as soon as possible.” 

“My newborn needs an MRI…for Birthmarks?” I asked.

She explained to us that the way his Nevus is on his head, with 100s of little nevi freckled down the skin of his back- that it is often seen as a red flag for a condition called Neurocutaneous Melanosis. She left our room shortly after answering all the questions she could. I was supposed to be moved to a recovery room, but I was beside myself with grief. For an hour, I cried and spent all my time on Google reading the outcomes of babies diagnosed with NCM. My husband Nathan was battling it out with our insurance trying to schedule a dermatologist visit & MRI at Lucile Packard Children’s Hospital. Lovingly, Nathan reassured me that NCM is a rare disease and that Google said it happens to kids with GCMN & LCMN, which Weston doesn’t have.  

At 21 days old, we drove 80 miles up to Lucile Packard Children’s Hospital for his sedated MRI. I don’t know if it was the post-partum hormones or if the fear of possibly discovering a diagnosis I desperately feared would come true… but I could barely keep it together as Weston’s little body went from thrashing around to a deep sleep as they administered the anesthesia. After I kissed his sweet face, they walked me out into the lobby and let me know it’ll be a 45-minute wait. 1 hour, 2 hours, 3 hours… I checked the receptionist's desk, asking for an update.

“He’s moving too much, and they need to get the scan from another angle.” 

Odd, considering he’s sedated. I waited another hour before his name was called, and I walked back to a post-op recovery room. 

Due to Weston being sedated at his age, the policy is to stay 24 hours in the hospital for observation. I was allowed to stay in a room down the hall from him with 24/7 access. I found myself surrounded by moms visiting their babies in the NICU wing. 

As I was rocking Weston, a neuro-student doctor came into the room. “Mrs. Phelps, I’m with the neuro team reviewing Weston’s scans. Has anyone come to talk to you yet?”

I instantly felt my stomach twist, knowing that if they’re coming to talk to me personally- it’s something that can’t just wait for a follow-up appointment or phone call. “We found lesions, several lesions, in his brain. It’s a condition called Neurocutaneous Melanosis.” I just froze. He really didn’t need to explain further because I had 3 weeks of doom-scrolling research under my belt. A partition was wheeled around me, giving me privacy as I wept. The neurodoc hugged me and let me know they were going to visit with the lead neurologist in the morning to discuss his case in further detail. I couldn’t really call anyone. My husband was back in Monterey attending a NPS Daddy Daughter dance with our daughter Harley. I couldn’t bare calling him and ruining their night. I didn’t sleep a wink.  

The night blurred into day. My husband was granted permission to attend our meeting with the neurologist, so our neighbors watched our kids for us. We both saw the scans, but we still had so many questions- we just didn’t know what to ask at the time. I felt like a zombie, unable to truly focus on what was happening around me. My husband and I took Weston home that afternoon and both knew we had a very long journey ahead of us. 

Weston won the hearts of everyone he met. Ophthalmology, dermatologists, neurologists, gastroenterologists, plastic surgeons, speech therapist, physical therapist, occupational therapist, geneticists…just to name a few. We were left with another surprising discovery that Weston’s genetics results came back as a rare mosaic fusion called “AGAP3-BRAF”. We wanted to make sure Weston would have the testing completed in case we ever needed to use genetic therapy to slow NCM progression.

Our lives started to find a rhythm, and his diagnosis didn’t dwell as heavily over us as Weston started hitting his milestones with the help of OT & PT. Nathan was able to return to his studies, and I was finding my footing in the awareness community. With not having control over how to heal Weston, I pour my attention into what I can control- which is making his future a better place. Since late 2023, I have volunteered my time with anything the Nevus Outreach asks of me- and with Weston’s Instagram, I continue to advocate and spread awareness for CMN & NCM.

During our cross-country PCS (move) from Monterey, California to Quantico, Virginia, we had the pleasure of stopping in St. Louis and attending the Nevus Outreach conference for one whole day.

To say it was life-changing is an understatement.

It was a full-circle moment to hug these families I have loved virtually for almost 2 years. I can not explain the joy we experienced seeing kids like Weston run around and feeling heard and accepted by fellow parents who were walking the same journey we were on. Although our circumstances coming together are not ideal, it made me extremely proud to be a part of this community! It truly lit my passion to continue fighting for our Nevus community’s future- knowing I want to keep this amazing organization around for parents who find themselves in our shoes 30 years from now.

 Which brings us to today, September 2024. Weston is doing amazingly! He’s about to celebrate his 2nd birthday, asymptomatic. To celebrate, we are hosting 2 fundraisers- one in-person and one, virtually.

We can only hope by telling our story that you are inspired to join us in making a change in the nevus community. All our talents combined can make a difference; your time & presence is the ultimate gift in making the future brighter! I challenge you in 2025 to tell your nevus story & fill our community with positivity. I look forward to hearing your story! 

-Kimberly Phelps