Perfection in the Unexpected Journey: Everett’s Story

June 6, 2013

 When you think of a birthmark, you probably think of a small, insignificant mark or spot. A “stork bite” or “angel kiss.” That’s what I used to picture when I thought of a birthmark; however, since my son Everett was born, the term birthmark has taken on a whole new meaning.

Let me back up a bit. Our story began when I married my handsome husband Joey in the fall of 2010. We decided after a year of marriage that we were ready to start “trying” for a baby, thinking that it would take at least a year before we were actually pregnant. 3 months later on a sunny Saturday morning, we were staring at a faint line on a pregnancy test. I went on to have a very smooth and uneventful pregnancy, and at the risk of being hated by pregnant women everywhere, had a relatively pain-free labor and delivery experience. (Yay for epidurals!)

photo_1At 7:05 pm on September 14, 2012, my life changed forever when I heard the first cries of my baby boy. He let out one throaty, deep cry and then was quiet. As the nurse took him over to weigh and measure him, I breathed a deep sigh of relief and exhilaration through my happy tears. Joey excitedly relayed stats to me as he watched the nurse do her job. I then heard him ask, “What is that on his forehead?” I turned my head but couldn’t see much. They briefly speculated what it could be; bruising from the forceps used in delivery, a birthmark, etc.  We didn’t think much about it and carried on with our precious, brand new baby.

The next morning once we had a chance to rest and spend time with him, we noticed that it was rather large and covered a good portion of his head, almost 3/4 of the left side and down onto his forehead. However, since he was born with so much hair (basically a Justin Bieber wig) it was really hard to tell and most of our family didn’t notice at first glance. The morning we were getting ready to leave the hospital, the doctor who did his circumcision casually mentioned she thought his birthmark was actually something called a Congenital Nevus. She didn’t claim to know much about these types of birthmarks so she couldn’t elaborate much for us. We were a little concerned and curious, but happily left the hospital with our healthy baby and a dermatologist referral.

photo_2When we got home, Joey being the researcher that he is, took to the web and looked up congenital nevus. The results were very overwhelming to say the least. Images of birthmarks covering a child’s entire face or torso popped up along with stories of malignant Melanoma and emotional trauma. This got his attention majorly but he didn’t voice his concerns to me right away. I’ll never forget the moment or the simultaneous love and pain I felt from my husband when he broke down in Everett’s nursery as I was feeding the baby in the glider. He told me about the info he had seen online, and that he was sad and scared. He told me how much he already loved our son and that he couldn’t bear to think of him suffering in any way. I hadn’t been as concerned myself since I hadn’t researched it and didn’t want to get myself worked up about anything until we had the dermatology appointment and they confirmed that this was even what it was. However, in that moment with my 3 day old son in my arms and my husband beside me, I felt the first pang of worry that our journey with our new baby might not be as “normal” as we expected.

We met with the local dermatologist and were quickly referred to a specialized pediatric dermatologist at UAB in Birmingham. Those next few weeks while we waited for this appointment were flooded with so many emotions. We were so happy to have our otherwise healthy baby at home, but also concerned about the ‘what ifs’ and unknowns, plus dealing with the typical new baby stuff of sleep deprivation and just figuring out what the heck we were doing with a newborn. Family and friends were visiting every day and some would ask about the birthmark and we weren’t quite sure how to respond or explain it. We were uncomfortable discussing it at first, or it would make us sad to.

Ophoto_4nce we met with the dermatologist at UAB, we received the confirmation that Everett’s birthmark was a Large Congenital Melanocytic Nevus (CMN). This is a rare skin condition that occurs very early in gestation, and only affects approximately 1 in 20,000 babies born in the U.S. Congenital, meaning it was present at birth. Melanocytic, meaning pigmented based skin. And Nevus, meaning any form of birthmark or mole. We were told that the next step would be to do an MRI to check for Neurocutaneous Melanocytosis (NCM) or melanin deposits on his brain. This is standard procedure for babies born with a large CMN. If there are melanin deposits detected in his brain, it could potentially cause complications in his central nervous system. Which in turn, could affect his basic motor skills and other necessary functions.  Also, anywhere melanin is detected, there is a risk of Melanoma and this includes the brain.

Since Everett would have to be put to sleep for the MRI we were advised to wait until he was at least 4 months old to do the scan.  Patience is not one of my virtues, so let’s just say waiting those 4 months was at times, excruciating. The worries and unknowns would creep in the back of my mind and at times I couldn’t control my fears. Even though Everett was thriving and developing right on track and displayed no symptoms of NCM, the ‘what ifs’ clouded my brain and my heart.

During this waiting period we thankfully discovered an amazing support group for fellow “nevus parents” on Facebook along with a very informative website, www.nevus.org.  Strangers quickly became friends and many of them helped ease our fears along the way, shared their personal journeys with us, and answered all of my worried-momma questions. I’m so grateful for these folks.

Finally, when Everett was almost 5 months old, we had the MRI done and received a true answer to our prayers: CLEAR, NORMAL results. It was a weight lifted like none other and we are so far beyond thankful. Not every child with a nevus gets these good results and we are more aware than ever how blessed we are. Once we were past that first step, our next step was to make the decision on whether or not to remove it. We’ve found that plenty of people undergo removal surgeries but about the same amount of people choose to leave it and monitor it, much like you do a mole. For us, the most compelling reasons to remove would be to lower the risk of melanoma in the future and for cosmetic purposes and how that may affect Everett emotionally in the future. 

photo_5At first we weren’t sure if removal was even a possibility due to the size of the nevus but along the way of our journey we learned of a process called tissue expansion and an amazing pediatric surgeon in Chicago named Dr. Bauer.  However, it’s a multi-step process with several surgeries so we did not take our decision lightly. The short explanation is that it’s similar to breast reconstruction after a mastectomy. The surgeon creates a little “pocket” next to the nevus, underneath the surface of the healthy skin. He then inserts the expander which looks a bit like a deflated balloon into this pocket. He then creates a port under the skin. Over a course of 11 weeks or so, you inject saline into the port to fill the expanders up gradually and therefore create new tissue/skin. Once the expanders are full, the surgeon removes them from under the skin along with as much of the nevus as the new tissue will allow, and then pulls over the newly expanded skin to cover the area removed. Tissue expansion (as opposed to skin grafts) allows for normal hair growth and (as opposed to laser treatment) allows for removal of all pigmented skin cells with minimal scarring.

photo_6After months of research, analysis, and prayer (and then some), we finally made the decision to pursue removal surgeries. Our first surgery was on April 16, and we have just completed our 4th out of 10 expander fills. I am thrilled to say that Everett is doing great with the process. We do the weekly fills ourselves at home with Dr. Bauer’s instructions, supplies, and numbing cream. It was super intimidating at first but it is quickly becoming routine. I hold Everett and give him a bottle while Joey does the actual fills. Everett doesn’t feel A THING and even falls asleep sometimes! He has been nothing short of amazing, brave, and resilient. It’s strange to say because he’s an 8-month old baby, but I admire him. He’s truly my little superhero!

photo_7Removal surgery is on July 1, and we are hopeful and prayerful that Dr. Bauer could remove the entire nevus with only one round of expansion. However, we are being realistic and are mentally prepared to have to do another round and the same process again.

Our journey of parenthood so far has not been what we imagined or expected; however, I would not change a single thing about our experience. We have grown as individuals and as a couple and I’ve personally learned humbling lessons in being a more empathetic, compassionate and accepting person. Our faith has been strengthened and we have reveled in God’s plan for us and for our baby boy. However, the most life-changing aspect of our experience is the same of any other new parent: the true, unconditional and perfect love that we have for our child. At first I struggled to accept that my baby was born with an “imperfection.” It is not genetic or hereditary and there are no known causes as to why this occurs when it does, so I questioned a lot in the beginning, “Why us?” “Why him?” I got the peace to my questioning and had my first overwhelming moment of this unconditional love a few weeks after Everett was born, when I looked at him and didn’t SEE the nevus anymore. All I saw was my utterly perfect baby, so fearfully and wonderfully made by God. He was meant for us, just as he is, and we are meant for him, just as we are.

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So yes, over the last 8 months we’ve had MRI’s, surgery, and expander fills…but way more importantly, we’ve also seen Everett smile for the first time. Roll over for the first time (and we caught it on camera!) Reach out to be picked up. Discover our cat and dog and squeal with joy. Sprout his first tooth. Giggle uncontrollably at “Peek a Boo.” We’ve been peed on and pooped on (and learned to be quick with diaper changes). We’ve seen his eyes light up when he sees his grandmothers (and their eyes too). I’ve seen my husband become an incredible father. I’ve rocked my baby to sleep and felt a kind of joy and contentment that is a bit indescribable. I’ve become even more in awe of God’s love for us as His children; imagining that as much as I love my son, God loves him more.

And I can’t think of anything more perfect than that.

headshotMindi Kern is a wife, new momma, and advertising account executive living in Madison, MS. Her best day ever would include the following: a beach, a good book, Joey, Everett, a movie, and cheese dip. She really loves cheese dip. You can keep up with Everett’s journey at mindiandjoey.blogspot.com.

 

Margie Bryant June 6, 2013 at 11:48 am

Mindi you and Joey are a testament to couples everywhere, your devotion to each other and Everett is so warming. I love yal, but more I respect yal. I strongly admire your strength and love for life. I have always smiled through the years when I would hear your giggling knowing close friends were having fun. Now I still smile as the families grow and that giggle is still heard. Love Yal!
Margie

Anna July 16, 2013 at 11:44 am

I thought that I had read everything posted on this site but somehow I missed this. Thank your for sharing your story. Your baby is beautiful and wonderfully made! Will be praying for you all as you continue to make difficult decisions and do what is best for your child. He looks like he’s a trooper!

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