We first met Holland when her mother sent in a photo of her baby sporting UV Skinz, and we immediately fell in love with her sparkly eyes and her sweet smile. It was a couple of emails later that we learned just how special this bundle of energy is and how important staying sun-safe will be to this little girl throughout her life. Holland’s mom, Catherine, shares her daughter’s story here to help further understanding of Holland’s challenges…and it’s a safe bet to say we are all on ‘Team Holland!’
On August 18, 2015 Holland came into this world like any other child. The pregnancy with her was one of my best, with less health risks and issues then my first two. Yet when she came out the concern on everyone’s face that helped deliver her was something I will never forget. She was a big healthy baby girl, over nine and a half pounds, with lungs of a banshee. I noticed the Nevus on her knee first, thinking it was nothing more then a birth mark. As several of my friends had children with a darker birth mark. I remember thinking to myself, well when she has to shave her legs one day that will be fun. It was my husband though who had gone from your typical emotional father, to pale concerning features and silence.
I had her via c-section so I was unable to go with her when they took her off, to clean her up run all the vitals. When I had asked what was wrong, the two doctors and nurse kept saying “everything is fine, everything is fine, she just has some large birth marks.” I thought it sounded odd, but I was more overwhelmed and happy I had a healthy baby girl. While in recovery I still had not seen her yet, my husband was with her in the nursery. It had been a nurse that told me, they requested a specialist to come in and look at her. Because she ended up having “Marks; two on her head, One large one on her back, and one on her knee.” When I was finally in my room they brought me her, and I was so thrilled to hold her, and cuddle her I hadn’t truly looked at her back.
When I changed her for the first time, it was when I saw it. It is hard to explain what I felt then, something in me made my stomach tighten. It wasn’t because I found it or her ugly in any way. It was because I felt like I had done something wrong to create this. For at that time I had no idea what it even was. So for a full twenty four hours I had honestly made myself sick to my stomach. Trying to figure out what I had done in pregnancy to have caused that.
Luckily the next day we met with her doctor. A specialist who has been working in the Nevus community for over seventeen years. She explained to us what it was, and that we honestly had done nothing to create this. Less then 1% of the world is even born with this let alone a giant one and how is still not fully known. She explained the risks that also came with it, and what we would have to do–what Holland would have to do her entire life.
So to answer a few questions about our daughter:
What type of skin condition does your daughter have?
Giant Congenital Melanocytic Nevus (She has a lower trunk nevus-Below her shoulder blades to her tailbone upper rear) You can read more about GCMN at various sites including www.nevus.org
What was the primary treatment facility involved in her care?
Right now there is no treatment facility for her. Unless you count those in her life that keep up with making sure she is covered and protected from the harmful UV rays. There has been talk of removal, but it has not been proven that it helps sufficiently lower her risk. Let alone that it is a graphing procedure; that we ourselves have opted not to do; as it is as of right now based on cosmetics, not full prevention. (Though we do not discourage other families that have considered this, it was just something for us risk wise did outweigh the push to do it). So we keep up with sun-blocking her every 20-40 minutes because she burns, and wearing UV clothing (from UV Skinz!).
What organizations were the most helpful to you?
The specialist she sees is the most helpful to us. But she also directed us to www.nevus.org which was a site that filled us in on both the major and minor cases of Nevi’s. On top of that, we reached out to other social media groups that have created groups for those with Nevi’s.
What would you say has been an impactful experience from her treatment?
There is no actual treatment or what she has. There is/are helpful preventions such as UPF +50 sunblock and clothing.
What would you most like people to know about your family?
We are not ashamed if people stare or ask questions. We wish to spread awareness to a condition many do not know about. We are grateful and very lucky that though she has sensitive skin and a higher risk for cancer, she right now is still one of the luckier cases compared to others born with this.
What is your greatest source of strength and/or inspiration?
Holland. She is a child that is so happy and so loving. She smiles every single day and doesn’t know a stranger. She loves the camera and the attention of anyone willing to share their time with her. Her strength is something I hope carries on the older she gets and shares with others.
How did this diagnosis change your/her life?
It made it hard at first, to be honest. You don’t realize how much sun you expose yourself to until you have a child you have to watch. Not only because of the Nevus but because she also has very sensitive skin, that burns very easily. We have had to change some things around such as when we go out with her even to just get groceries. We also buy clothing (when we can) that is made to protect her, because you can’t typically get them at just any store.
What challenges will Holland have going forward?
Her whole life she will be battling the risk of preventing melanoma. Why? Because those born with Nevi’s have a higher risk of getting melanoma than the average person. Her other big challenge it seems will be spreading awareness and acceptance. I have heard from many that are now older bullying is a massive source of resentment for those born with Nevi’s.
Is there an inspirational quote or song that keeps you moving forward and gives you strength in your life?
Hollands song to everyone “One Drop” By plumb
You mention that Holland’s risk for skin cancer is very high? Why? What makes Nevi’s more dangerous when dealing with Melanoma?
Those born with Nevi’s that cover more than 5% of their body are already at a greater risk for cancer. Those born with Giant Nevi’s are at an even higher risk due to their nevus allowing more exposure. Nevi’s can become “rooted moles.” So unlike us, if our mole has cancer we can usually have it removed “fairly” easy. Those born with Nevi’s that become rooted will have a harder time. For if a rooted Nevus ends up with cancer, whatever it is rooted to will also get it. (Bones, tissue, and organs.) Which makes removing it and treating hard, and a lot of times not successful.
So if there is anything we can share with you it is this. Be grateful every single day with what you are given. Protect your skin as well as your loved ones. Spread awareness to those that do not understand the risk to such a thing. “Always smile, and give it all you got. It only takes one drop of love to spread kindness and awareness in the world.”