Beautiful Scars: Adopting a Child with a Congenital Nevus

September 7, 2016 birthmark, Congenital nevus, Family Stories, giant congenital nevus, medical needs checklist, medical waiver, referral, September 2016 Feature - Skin Conditions, Skin Conditions 4 Comments

When my husband and I first started looking into adoption, we were told that because of my epilepsy, we could only apply for a special focus child.

In Adoption circles, Special Focus means either that the child has more than one medical condition, or has a more severe medical condition. Sometimes the label is given to older children. We were also advised to wait for a match with a child before beginning the paperwork process, just in case our Letter Of Intent was turned down because of my medical condition.

When we filled out our Medical Conditions Checklist in March 2014, we had checked off many medical conditions that we were open to. We did a lot of research and felt confident in the decisions we had made. While we were waiting, I came across the Facebook page China Waiting Child Advocacy.

In September of that year, a little two year old girl’s picture popped up. She was called Pippa and her special need was “nevus”. I knew what that was; it was checked off on our MCC. I didn’t just know what it was, but we had friends who had a daughter with a nevus, her name was Keziah (you can read more about their story here). We loved Keziah and knew that her birthmark did not define who she was.

From knowing her we also felt we had some knowledge on the condition. I asked about “Pippa”… she was special focus! The only thing was that she was with a different agency. We waited three agonizing months for her file. We knew that God was in control and that if she was meant to be ours, He would find a way.

And He did.


michelle2


The same day we got her file we wrote our letter of intent. We received pre-approval only three days later. Now the paper chase was on. I wanted to move fast as I felt such a strong desire to get things done and to get to her as quickly as possible. We wouldn’t realize until we got her, exactly how that would benefit her.

In between all the paperwork we learned as much as we could about her birthmark. What we learned was that she has a Giant Congenital Nevus, and it looked like a superhero cape. It covered her back and underarms and went over her shoulders and slightly down her arms. She also had larger satellites (satellites can be all sizes of moles, some nevus owners have hundreds) on her legs, head, and bum as well as some smaller ones.

Her file stated that she was developmentally on track. We had no reason to believe that her nevus was causing her any health issues. I joined Facebook groups, one called Nevus Outreach and the other Nevus Love, both very helpful. The support and shared wisdom were extremely useful.

Our friends, the parents of Keziah, chose removal. We knew all that was involved having followed them through their journey. We discussed what we would do. We felt that Anna’s nevus would be too large to remove. And, if we did, it would be an extremely long process. Many parents choose removal and many do not – I think it’s a personal decision and I don’t believe one way is better than the other. We decided not to make any concrete decisions yet; however, we were about 90% sure we did not want to remove. Of course we would consult with doctors and if there were any medical concerns, we would discuss that and look at removal options.

In May of 2015, I came in contact with another mom who was leaving for China to adopt her daughter who was living in the same orphanage as Anna. She had plans to go visit the orphanage and I sent her pictures of Anna and asked her to keep her eyes open for her and to let me know how she was, and how she looked. I also asked her if she could take pictures and/or videos for me. She told me she would do all she could.

I had such butterflies – I couldn’t wait to hear back. But when I did, it was not what I’d hoped to hear. This other mom had not seen Anna anywhere. She asked about her and the orphanage staff would not give her any information. Upon reading that I started to shake and cry.

Where was our girl?
Was she sick?
Why wouldn’t they say anything?

I was so worried and upset. All we could do was pray. We knew she was in God’s hands, we had to have peace with that… which was easier said than done. Every day we prayed for her safety and health, prayed for God to be beside her. The urge to hurry along the paperwork became stronger. Our five questions and update after LOA (Letter of Approval) couldn’t come quickly enough.

Two of the questions we had asked were: had she ever been in the hospital? And had she ever lived in a foster home? We waited and waited for an update. Every day that we waited I wondered why we weren’t hearing anything. Earlier in the year, we had received updates with pictures and videos, voluntarily from the orphanage. Why not now?

Then, finally we got one. There were no pictures attached though. The answers were vague: no she had not been in the hospital, no she had not been in a foster family either. Her measurements were the same as the last update, except somehow her feet had grown two sizes. It didn’t feel right. We kept praying.

At last, October 12, 2015, we got to meet our girl. Oh, what a day!

We walked in the room and the first thing I noticed was that her head had been shaved. We still recognized her right away and thought she was beautiful. As we were getting ready to leave, the director was talking to us through our guide. She was telling us that Anna had surgery and was wearing a compression suit, she lifted up Anna’s pants to show us the compression suit. She said to leave it on until we got home and saw an American doctor.

We were confused. We were so taken back that we didn’t even know what to say. We were not in any position to ask all the right questions. We were just trying to comfort our sad daughter and wanted to take away her pain. We did ask what kind of surgery she had. It was surgery to remove her birthmark from her back. The director said that they wanted to make her look “normal” before we came. Oh, what had they done to our girl?

When we got back to the hotel, we noticed that she was stinky. I was worried about infection. Did they really expect us to keep this compression outfit on until we got home? Part of me was scared to look and see what had been done. It was so tight that her feet were swollen. I carefully lifted the top to have a look and was shocked by what I saw. It looked awful, it was really red and raw, and the skin on her back was rock hard, you could knock on it. We had never seen anything like it before. I carefully took the suit off and saw that the smell was coming from the pants that were stained because she had no underwear on underneath.

I gently gave her a bath. Along with the grafting scars she also had scars on her bum, legs, and head. We right away contacted doctors in the U.S. and emailed pictures of Anna’s back and other scars. Both doctors we talked to said it looked like she had the birthmark removed on her back and had skin grafting done. It looked like she also had larger satellites removed. They said it should have looked better since she had the surgery already in April. They suggested that we try to get more information as well as her medical records when we went back the next day to sign the adoption papers.

Oh, how we cried that night. What she had been through… and for what?

The next day, we had lots of questions ready. We learned that she had had two surgeries, one in April and one in July. She was scheduled for a third surgery but we got there before it happened. They weren’t expecting us to get there so quickly… thank you, Lord!

She had been living in a foster home in Beijing in between surgeries. She had been in the hospital for 60 days after her surgery in July. When asked if there was a medical reason for the removal, the answer was no, they just wanted to make her beautiful so we wouldn’t back out of the adoption. It wasn’t medically necessary, it was all cosmetic. We weren’t told. Our agency wasn’t told. They had not been upfront in their updates. We were on an emotional roller coaster.

We had heard to expect the unexpected and we were prepared for everything but this. The director was actually getting very defensive and upset that we would be so ungrateful that they did this. They were doing us a favor was how she saw it. But this was certainly not what we wanted.

That night we decided we could not get caught up in our anger and ask Why, God? Why would they do this to her? All without a mama to sit beside her. We had to move forward and concern ourselves only with what needed to be done from this point on.

We had to remind each other that even though we weren’t by her side through the surgeries, that God was, and He brought us here quickly which prevented her from having any more surgeries.

Even though we didn’t understand it all, we took comfort in knowing that God has a plan, even in this. She was with us now and how thankful we were for that. Now it was our job to get her the treatment she needed to heal properly, to make her comfortable, and most importantly, to love her unconditionally.

We’ve been home with Anna now for almost eleven months. She is doing great! Her back looks a lot better. We found out that her skin does not heal well. She has hypertrophic scars, which are red, thick, itchy and painful scars.

When we first got home we massaged her scars every day with moisturizer. She was constantly scratching, she would only sleep on her stomach, she wouldn’t sit with her back touching a chair. She has now, after ten months, finally been able to sleep on her back. She itches less and doesn’t cry anymore when I massage her scars, which are now pliable and soft. We are so thankful for these improvements.


michelle1


We took her to the dermatologist shortly after getting home and we watch her skin closely for any changes. Her remaining nevus has caused her no discomfort or pain. We see the dermatologist every three months during this first year, then it will be every six months. We monitor her skin for changes and we keep her skin protected from the sun when we are out for an extended amount of time.

She is such a joy to us! We love her just the way she is, birthmark, scars and all. Our boys have said that they can’t imagine her without her nevus. It’s just a part of her.

It’s our prayer for her that she will grow to continue to be confident in her skin.

If you are reading this and considering a child with a nevus and are unsure, I would suggest talking to other parents on Facebook groups. Gather all the information you can and pray about it.


michelle


God led us to Anna, and maybe He is leading you to a nevus owner too.

We wouldn’t have had it any other way.

– guest post by Michelle: blog || email



4 responses to “Beautiful Scars: Adopting a Child with a Congenital Nevus”

  1. Coosje Helder says:

    Oh, man, I love that smile!! What a sad, sad story to begin with. I cringed as I read it. And so glad she is with you!God bless you as you raise this little girl, and may she come to know him as her Saviour in every respect. Keziah’s Great-aunt

  2. Brett says:

    This is one of the most unique adoption stories I’ve ever read about: Realizing cultural differences can be vast, it’s nevertheless tragic irony that her caregivers believed they were somehow ensuring your daughter’s destiny when they choose such invasive procedures.

    Sometimes the sweetest miracles happen between the lines: How you tended to her hurt skin. Also, the precious reaction of your bio children to her ‘beauty marks’ says much about what really matters in your home.

    Thank you for telling this touching story and may God bless your family

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