Winnie's First Birthday Fundraiser for Nevus Outreach

Today is Winnie Grey’s first birthday! It is crazy to think that there was a point in time where we didn’t know if we would be celebrating this milestone. After a very long labor and delivery, Winnie was finally born at a whopping 8lbs 5 oz’s at 1:02 am! Upon delivery I immediately knew something was wrong based on the doctor’s reactions. My heart sank. The doctor quickly flashed her to us and then rushed her away where she was swarmed with doctors. I could hear, and see, my husband Zach trying to break his way in and yelling, “Let me see my daughter!”

Zach told me that he could see that she had a very large birthmark that covered her butt and left leg up until her thigh. She also had smaller birthmarks, which we later were learned are called “satellites,” on her legs, arms, back and head.  He assured me that she is perfect but noted it was jarring since it wasn’t something we were expecting. The doctor came over and told us that he has only ever seen this extremely rare disease in a textbook but thinks that she has Congenital Melanocytic Nevus (CMN). He said he had a call out to CHOP but until they knew more, she would have to go to the NICU. I was also informed that I had developed preeclampsia post delivery so I could only go to the NICU alone (thanks Covid) for ten minutes. I went to the NICU to hold Winnie for the first time while someone stood next to me timing me so that I could be placed on a magnesium drip ASAP to prevent a stroke. Despite everything going on, all I remember in that moment is that I felt so lucky to be her mom.

The next couple days were a blur. We were told by every doctor that we would have to wait until we were discharged and went to CHOP to learn more about Winnie’s condition. Since Winnie was born during Covid it was just Zach and I, with the support from our families from afar. We did what most people would do and turned to google. We learned that Congenital Melanocytic Nevus (CMN) is a very rare skin disease which only impacts 1 in 500,000 people. This is not genetic. A genetic mutation happens after the embryo is formed and there is no way for this to be detected before birth.  In our research we learned that aside from CMN there are many other complications that can come with it such as Neurocutaneous Melanocytosis (NCM), seizures, and hydrocephalus. What I distinctly remember is the following phrases jumping off the pages, “increased risk of melanoma,” “associated with neurological disorders and learning disabilities,” “potentially fatal,” and “poor quality of life associated with poor mental health.”

The day after we were discharged, we went to CHOP, where it was confirmed that Winnie had CMN. Her dermatologist confirmed most of what we learned on our google search. Winnie will be seen every 3 months to address the increased risk of melanoma, needed a sedated MRI of her brain and spine at 5 months to check for NCM, and will continue to develop smaller nevi “satellites” throughout her life. Her dermatologist was also extremely encouraging about the fact that, aside from the mentioned health concerns, Winnie is just a typical newborn baby like any other baby. Although I knew we had a long road ahead of us to ultimately confirm a clean bill of health, it was in that moment I remember we could finally breathe.

Winnie has spent the last year seeing many doctors and specialists to investigate any other potential health implications which are associated with CMN.  After waiting an agonizing 5 months, her MRI results came back inconclusive. Awe sought out another opinion with a neurologist who specializes in CMN/NCM in which NCM was ruled out. Not everyone is as lucky and their families are facing challenges far more difficult than us.

I was put in touch with Nevus Outreach, which is a non-profit organization dedicated to bringing awareness, providing support and finding cures for people affected by congenital melanocytic nevi and related disorders. This organization has been extremely helpful. I have been able to connect with families who have children with CMN as well as adults with CMN. Since this disease is extremely rare, there are not that many healthcare professionals who have experience with CMN. Through Nevus Outreach we found an extremely experienced surgeon in Chicago. There is conflicting research that removing the birthmark could decrease cancer risk and although the research is conflicting, we have pursued removal. There have been complications along the way, which we are still dealing with, but Winnie has handled everything like a champ!

Before Winnie has turned one, she has had five trips to Chicago, has been under anesthesia 4 times, has had 3 surgeries, has two stressed out parents and has been one brave and super strong baby! We absolutely could not have made it through this year without the support of our families and her medical team. My mom, Zach and I are now basically certified post-op wound care professionals.

We wanted to share Winnie’s journey to spread awareness of CMN and remind people the power of kindness. Our hope is it will prevent needless stares or rude comments. With this, we then have accomplished our goal. We want to make you aware of our special girl and the other children/adults in the world with Congenital Melanocytic Nevus. I have no doubt that Winnie will be a tough, confident and beautiful little girl but the more kindness and acceptance the world shows her for being the different the better.

Zach and I couldn’t be prouder to be Winnie’s parents and feel so lucky to have such an incredible daughter. We also wanted to share her story to raise money for Nevus Outreach. If you are considering getting Winnie a birthday gift, we are asking for a donation to Nevus Outreach in lieu of gifts.  The money raised will be used to fund research in finding a cure for Congenital Melanocytic Nevus as well to help fund the biennial Nevus Outreach Conference. The Nevus Outreach conference is held every other year. It is a time when people with a nevus and their family members, psychosocial experts and medical professionals from around the world come together to meet. These meetings offer a chance for people to forge relationships and get current medical information. Nevus Outreach has played a large role in our lives since Winnie was born. It not only serves as a support system for many families but also vows to raise awareness and continues to make tremendous efforts to find treatment and a cure for CMN. 

We thank you for taking the time to read our story and appreciate your support.