A mum has spoken out about her decision to put her four-year-old daughter through controversial treatment to erase her large birthmark.
Addie Hott was born with a giant congenital melanocytic nevus (CMN) and neurocutaneous melanosis (NCM).
CMN is a skin condition characterised by a dark, non-cancerous skin patch, whereas NCM is a related condition where pigment-producing skin cells grow on the brain.
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For Addie, this means her entire neck is covered in a birth mark, while she also has smaller marks covering her body.
The rare condition currently has no cure, but Addie undergoes regular treatments and surgeries to help mitigate the risk of her nevus becoming malignant.
Her parents, Heather, 31, and Rob, 36, decided to start her treatment at just six months old, with the tot having tissue expanders implanted under her skin, which are then slowly inflated to stretch the skin – with the new skin then used to replace the birthmark.
While the treatment itself isn’t for aesthetic purposes, the young girl has been subject to hurtful comments due to her skin.
“When Addie was still a baby, I recall an older lady asking – hopefully with best intentions – if the marks on her body were bruises coming from some form of abuse or beating,” Heather, a healthcare administrator from North Carolina, US, told What’s The Jam.
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“I took it in my stride and took it as an opportunity to educate this stranger on Addie’s condition, but it was hard on us.
“Addie’s now at the age where she has classmates ask if she is ‘dirty’ or calling the spots ‘poop’.
“[This is] something we could, unfortunately, see becoming more of a problem down the road.
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“Addie deals with mean comments from others with grace and doesn’t allow others’ words to hurt her.
“We are so proud of her courage.”
The treatment has proved controversial due to the misconception that the surgeries are for purely aesthetic purposes.
Heather said: “Not everyone agrees with nevus removal.
“We’ve had uneducated friends and people online ask why we would put Addie through the pain of procedures just to leave her scarred.
“Some people believe we should have left this decision for Addie to make when she was older.
“A fair amount of these comments may even be well-intentioned.
“Obviously, we do our best to balance the idea of embracing who she is and her birthmarks with the desire to have Addie be comfortable and healthier throughout her life.
“Everyone is entitled to their own opinion, and we respect everyone has their own views on the matter.
“For us, it was an easy decision to make because there is a high risk of Addie’s nevus becoming malignant in the future.
“Replacing the affected skin with clearer skin via expansion makes it easier to observe any changes that could be indicative of melanoma.
“Her nevus is also more sensitive and prone to injury, and it doesn’t sweat, causing her to overheat.
“Treatment will allow her to live a more comfortable life.
“And the expanders do not hurt her.
“At times it may cause some discomfort, but it can be relieved with over-the-counter pain medication.”
Her parents had been terrified of what the future held when the brave tot was born – having no inkling beforehand that something might be amiss.
A few hours after she was born, and having undergone several tests and an MRI, she was officially diagnosed.
Heather said: “We thought it was a death sentence.
“We honestly didn’t know anything at that point.
“We were terrified and felt so alone.”
Thankfully, Addie’s NCM is currently asymptomatic.
She started treatment for her CMN when she was two months old, but her first major skin graft surgery occurred when she was six months old – which involved taking a large piece of skin from her thigh and grafting it down her spine.
Heather said: “All of this has been incredibly hard and as she gets older, it just gets harder.
“From a logistical/practical standpoint, we knew that it would be better to start the treatments younger for a few reasons, most importantly because her skin is more ‘elastic’ at a younger age, allowing for the best possible results from any sort of nevus removal.
“Also, at a younger age, she can bounce back much quicker and has the benefit of being too young to remember her first several procedures.”
Now, Addie has had over 30 different procedures, but despite everything, she is a happy, healthy, and adventurous little girl.
Heather said: “I wish people understood that Addie is just like every other kid.
“Her birthmarks and scars are not contagious and they don’t make her weird.
“Olivia, our six-year-old, is Addie’s biggest cheerleader.
“We thought she would be her biggest protector too, but in all honesty, Addie is tough as nails and protects Olivia most of the time.
“We believe Addie still has several years of expander-based removal, but our medical team is reluctant to give us a concrete answer. It will go on until Addie decides she’s comfortable.
“Monitoring her for malignant growths or changes will be a lifelong process, though.”
Heather added: “We recognise that there will be difficult times; be they medical, social, or otherwise.
“All the same, the perseverance and courage that Addie has displayed through these challenges has made her a beautiful spirit, and we very much believe, and take pride in the fact, that she’ll enrich the lives of everyone she meets.”
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