special need highlight: focus on congenital nevus

November 20, 2013 Congenital nevus, Family Stories, Skin Conditions 9 Comments

During the first few months of our adoption process, I poured through waiting child files and researched varying special needs in anticipation of finding our child.  When we finally got the call from our social worker telling us she had a file for us to look at, I was ecstatic. I thought we had a basic knowledge of the minor to moderate special needs we were comfortable with for this adoption but when she mentioned this child’s special need… I was stumped.

 Giant Congenital Nevus? 

I saw this precious face when I opened the file…

IMG_3830 (2)

and I fell in love.

After reading through the file, I leaped into research mode but quickly realized that information on congenital nevus was lacking (to say the least).  I searched medical websites… family blogs…  adoption forums…   advocacy sites… but it was tough to find updated information about this special need.  Despite the lack of resources and because only God could orchestrate this plan, within two days I had a consultation with a plastic surgeon experienced in facial nevi (whose practice was only two hours from where I live) and a wonderful  phone conversation with another China adopting mother who had already adopted two children with facial nevi.  We sent our Letter of Intent to adopt that week and just four months later we met our beautiful daughter.

China 2013 070

Ten months home now, and we are still in awe of this sweet and sassy little creature.

We’ve received a ton of questions since being home but are asked the same two questions repeatedly….

What is a Congenital Hairy Nevus?

In layman’s terms, a Congenital Hairy Nevus is a pigmented birthmark that is present at birth.  Some nevi, like my Vivi Cate’s, are covered with short black hair.  Her nevus is larger than eight inches, so it is considered a ‘Giant Congenital Nevus’.  A giant nevus is rare.


A nevus on a face is also rare, which means our Vivi Cate is one rare little gem.

Depending on the location and size, giant congenital nevi and satellite nevi can be removed and it is very possible that your insurance may cover the removal because of the very slight risk (five percent) of melanoma.  Some families opt for removal while others choose to leave the nevus intact. Unless there are medical concerns, it really is a personal choice. An amazing resource for information for nevus families is the Nevus Outreach.

Why is a Congenital Nevus considered a special need?  Isn’t it just a birthmark?

While in-country, we had several locals inform us that our Vivi Cate would be considered a rare beauty… if only she didn’t have the ‘marking’. In China, the ‘marking’ (nevus) is considered bad luck and a curse. Being an orphan is difficult enough but having a ‘disfigurement’ (as they would call it) would keep her from going to school, having a job, living on her own, getting married, etc. The frightening terms ‘beggar’ and ‘trafficking’ popped up in conversation more than once during our trip to China. It only took a few hours after having her in my arms to truly understand the fear and disdain some locals had toward our daughter and her ‘marking.’ Some only stared… others grimaced at the sight of her. While standing in line at the airport bathroom, one woman stole one look at Vivi Cate, gasped, and darted out of the bathroom. Although superstitions seem silly to us here in the US, they have a very real presence in China.

The sad reality is there are so many children without a family because of these superstitions. 

Our Vivi Cate is a blessing.


She is crazy smart, incredibly spicy and will make you fall in love with her in 3.4 seconds.


She fits perfectly in our family, and she knows she is a treasure.

My prayer is that more of these sweet nevus kiddos will find families who will love and treasure them like they deserve.

~Guest post by Amanda

Waiting Children with Congenital Nevus

Meet Chase Update: My family has found me!


Chase is an honest and kind thirteen year old boy. He gets along well with his friends, classmates, and caregivers. He does very well in the school where he studies English, Chinese and math. He likes playing basketball, and is described as athletic. He is healthy except for idiopathic large shaped and pigmentation macularis multiplex. He says, I am happy in the welfare center, but I still want a family, I want to be loved by my future parents. Thank you for you to find a family for me.” Please consider this wonderful little boy whose life would be transformed by a forever family! Sadly, Chase ages out when he turns fourteen so he has less than a year for his family to find him.

Meet Tony


Tony was found at one year old. Although his file lists his special need melanoma, which means skin cancer, this is a bad translation. He has melanocytic nevi, which are moles. Specifically, he has a bathing trunk nevus with many satellites. He is now a four year old with bright eyes which make the caretakers very happy. He is deft in limbs, walking alone at ease. He is so sensible that he often picks up toys for other children. He would also coax or comfort children who are crying with a toy or playing with him. He can cooperate when dressed. He is polite and greets people. He gets along well with other children and is willing to share with them. He likes the game of hide and seek. He also likes outdoor activities and listening to music. His mental development is normal. He is currently on the shared list and available to single women or families working with any agency.

Meet Hunter Update: Hunter is no longer on the shared list


Hunter was born July of 2010 and is a talkative little guy with a good attention span. He likes scrambling for toys with the other children and playing clapping games with his caregivers. His development is on track and he is considered to be healthy and smart. He is shy with strangers, and is good at picking up the body language, expressions and tone changes in the voices of adults. He learned to walk right on schedule and his favorite game is hide and seek. Hunter has multiple black nevus spots on his body which currently don’t appear to be affecting his health or spirit. He needs a family to welcome him into his forever family! Could that family be yours?

Meet Brandon


Brandon is a sweet little 2 year old boy who has been diagnosed with multiple and large nevus on his body. Brandon is not afraid of strangers. He is currently living in the social welfare institute. He loves to smile and has an extroverted personality. Brandon doesn’t often cry and he sleeps very well. Brandon responds well when he hears sounds and he can differentiate between familiar faces and strangers. His daily life is one of routine and his life habits are very good. This precious two year old needs a family where he can learn the meaning of unconditional love and acceptance. He is currently on the shared list and available to single women or families working with any agency.

Resource for families considering adopting a child with this special need:
Yahoo Group

For information on beginning the adoption journey contact our Advocacy team.

9 responses to “special need highlight: focus on congenital nevus”

  1. Rachel Walker says:

    Our adorable Zhongshan girl was 8.5 when we brought her home. She’s missing two fingers from each hand and two toes from each foot. Her orphanage name was Ma Ling. We intended to keep the name until we translated the characters. It means “insult, heap of dirt, or grave.” We gave her a new name! The stigma surrounding deformities is obvious in China. Whoever found our Malani as an infant gave her a cruel name, seeing only her deformities and not the radiant child she was — and is. Thanks for sharing your story.

  2. Megan Knox says:

    Amanda exaggerates. It’s 1.4 seconds until you fall in love. Proud to call you friend.

  3. Oh how I love your sweet girl! She is beautiful in every way! The world needs to be educated and through our Christian faith we need to step out and do just that!
    We had the pleasure of being in China at the same time with this delightful family!

  4. Janina says:

    Has a family come forward for Chase?

    • Liberty says:

      Chase is still waiting, a family has not come forward yet. He is on the shared list so a family working with any agency can find his file. Please email me for more information.

  5. I found your blog while looking up information about my son’s nevus. His is nothing really. Your whole family is beautiful, as are the other children awaiting adoption. I hope people who are researching for their own children find comfort here. It’s one thing to get information from doctors but entirely another to get a personal and comparable experience from a peer. Thank you for sharing. <3

  6. Lisa Montcalm says:

    I was looking at two files of children with a large nevus on there back and neck. They both had a couple of smaller ones about the size of a baseball on their legs. So I was wondering if you know anything about the removal process? Any info would be appreciated

    • Amanda says:

      Hi Lisa! They would most likely use skin expanders to remove the nevi. I would suggest finding a plastic surgeon who specializes in nevus removal and having them look over the child’s file. The reason I suggest consulting with a plastic surgeon and not a dermatologist is because in my experience, most dermatologists do not have a strong background in large nevi, and we’ve been given incorrect information from them more than once. You can look on the nevus outreach website for info on plastic surgeons in your area. If you are wanting immediate answers, a good place to ask about surgeons close to your home is the Nevus outreach Facebook page, and you can post your question there. Families who have lots of experience and live all over the country are active on that FB page. Please let me know if you have any more questions!

  7. T. says:

    I was born with this condition. nevus on my face covers almost the whole left side and it goes into my head. the part under the hair is not visible to others, but when I walk around in public, people look at me strangely because half of my face is in another color. they have no idea what it is and how hard for me was to find friends at first because everybody was scared that it’s something contagious. it’s difficult to deal with it because I can’t be out for long, I can’t be at sun without all the protection because it can cause complications. the way you talk about your daughter with love and the fact that you see the actual beauty in her is amazing. other people should be more like you!

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