On January 11, 2013, our family welcomed our third precious gift, Khloe Elizabeth, weighing in at 5 pounds, 9 ounces and 19 inches long. Miss Khloe made quite the entrance into this world! Although she wasn't due until January 26, I was admitted to be induced on January 10th because of IUGR. They were going to begin my induction at 8a.m. on January 11th, but Khloe had other plans. At 3:50 a.m., I awoke to my first contraction and was already dilated to 3 cm. At 4:52 am, Khloe came flying into the world at warp speed! An hour after my first contraction, I was holding my baby girl in my arms! Fortunately for us we were at the hospital when labor started or I would have had her at home or on the side of the interstate! We instantly fell in love with this amazing little girl. She stole all of our hearts the first moment we laid eyes on her! Khloe joined brothers, Kahne (8) and Kole (3). Our family is complete!
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| Khloe Elizabeth Carter, 1/11/13, 5lbs, 9oz and 19 inches long |
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| Khloe and Mommy |
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| Khloe and Daddy |
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| Kahne holding Khloe for the first time |
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| Kole with his sister for the first time |
A few hours after her birth, the nurse entered the room to give Khloe her first bath. When the nurse removed Khloe's hat, I felt like all of the air had been sucked out of my lungs! All I could see was a large dark spot on her scalp that looked like blood. I immediately jumped from the bed and made it to her in a half a second. I am certain that I have never moved so fast in my life! It was obvious the nurse was concerned but reassured me it wasn't blood and that it just looked like a large birthmark on her head. The room started spinning and fear combined with the fact that I had just given birth overcame me and I cried. She finished Khloe's bath and told me that when the pediatrician arrived, she would have him look at her immediately.
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| Seeing Khloe's birthmark for the first time |
As soon as Khloe was back in my arms, I started examining her head. It was a large dark brown patch on the top left side of her head with a rather large, raised mole, almost black in color that had a very strange circle on the top of it. There was also a smaller dark spot on the back of her head that was covered by a patch of hair. We now lovingly refer to that patch of hair as her "mole-hawk" ;). I can handle a birthmark, that was no problem. I mean, it was on her scalp anyways so her hair would eventually cover it, right? Once the pediatrician arrived, Khloe was taken back to be examined.
After about 30 minutes, the nurse brought Khloe back into the room. "Everything looks fine,"she said. "She is perfect. He will be in here in a few minutes to speak with you." My heart went in to overdrive and I thought it might pound right out of my chest. Once the Dr. arrived in the room, he confirmed that it was in fact a birthmark called a Congenital Melanocytic Nevus (CMN). He went on to explain that Khloe's nevus was bigger than any nevus he had ever seen (something every mother loves to hear) and that this particular type of birthmark carries some risks of melanoma and would have to be removed but admitted he didn't know a lot about this disease because it is so rare. He also expressed his concerns for the dark, raised mole that was on Khloe's nevus. Fortunately for us, we have a pediatric dermatologist here in East Tennessee that had some experience with CMN. An appointment was made and she would have her first appointment on January 18th.
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| Khloe's Nevus. The dark spot is the raised mole that was on her nevus. |
Once the pediatrician left the room, I immediately went to Google (because you know that everything you read on the internet is true, lol) and found some very upsetting information regarding CMN and the risks of melanoma and other complications associated with it that sent me in a tailspin. I spent most of the rest of that day bonding with our precious little girl and while she was sleeping, I was researching. I finally stumbled upon a website,
http://www.Nevus.org, that had actual facts about Congenital Melanocytic Nevus. FINALLY!
What is Congenital Melanocytic Nevus (CMN)?
CMN is a rare birthmark, one the size of Khloe's occurs in 1/20,000 to 1/500,000 births, that happens because of a defect during embryonic development. It is not hereditary and there is no known reason for it to occur. I have been reassured dozens of times that there was nothing I could have done to cause this or prevent this from happening. Khloe's is defined as giant because of the size it is expected to be when she is an adult. It is referred to as melanocytic because it was caused by pigment-producing cells called nevomelanocytes. These cells are not evenly distributed and clumped together resulting in moles on the skin because of the higher concentration of pigment.
Some of the risks associated with CMN include a 5-7% increased risk of melanoma. Some other complications may occur when melanocytes, or pigment, occur in the central nervous system (which is extremely rare in something that is already really rare to begin with).
Most nevi produce a lot of hair, lack sweat glands and can become very itchy. The skin is also very fragile and can tear very easily. Khloe is constantly scratching her nevus no matter how short or often her nails are clipped.
For more information on CMN, please visit
Nevus.org. This is the most up to date and accurate information available!
Khloe's First Doctor Appointments
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| On our way to our first appointment |
On January 14th, Khloe went to her first pediatrician's appointment. She was weighed and checked as any normal newborn would be. I did learn, however, we would be coming back two more times that week to have her head measured to make sure it wasn't growing too rapidly which could be a sign of hydrocephalus (which could occur had she had pigmentation in her brain). We now know our pediatrician was taking extra precautions for which I am grateful. He expressed his concern for the raised mole and was as anxious for her first dermatologist appointment as we were!
Khloe's first appointment with her dermatologist was January 18th. We were so happy to have someone in the area who knew about CMN and answer my long list of questions! She did confirm that Khloe did have CMN and recommended that we have it removed for mulitple reasons. The first was obvious-- to reduce the risk of melanoma. The second was because once she gets hair (and nevus hair is often very, very thick) it would be hard to monitor it for any changes. At this point, removal was the furthest thing from my mind. But I had to ask; had she known anyone who had developed melanoma in a scalp nevus? Unfortunately, her answer was yes. The child was 18 months old. Once again, my heart was racing! Not my baby!
Once she examined Khloe's nevus, she determined that the black raised mole everyone was so concerned about had to biopsied, ASAP. Because of me being such an emotional mess at this point (which I blame on hormones and all of the unknowns we were experiencing with Khloe's diagnosis), my mom (aka Nana) held Khloe while they biopsied it. THANKS, MOM! She assured me that she didn't think it was melanoma but it was a concern for her. Now we had to wait! She also referred us to Cincinnati Children's Hospital to meet with a plastic surgeon to get a "plan" together.
A few days later, we received a call that Khloe's biopsy results came back benign, but they were sending them on to a pathologist in Boston who specialized in pigmented lesions. YAY!!! It wasn't melanoma! I was so relieved! In the meantime, the mole that Khloe had biopsied was coming back with a vengeance. I had never seen anything grow that fast! It was crazy and unnerving.
Now that the first dermatologist appointment was behind us, I was starting to feel better about everything. Knowing that the mole that everyone was so concerned about on Khloe's nevus was not cancer was such a weight off my shoulders. I was finally getting into the swing of things being a mom of three and getting Khloe on a schedule as much as possible. Then one morning, the phone rang. It was Khloe's dermatologist. She was making this call herself. I knew that wasn't going to be a good call!
Crazy Moles and Really Big Words
The dermatologist began to explain that while Khloe's mole was still considered benign, it was something called a Pigmented Epithelioid Melanocytoma (say that five times fast). She said that while it wasn't cancer, it could act as cancer and spread to lymph nodes or potentially grow through her skull and had to come off immediately. She had already contacted a skin cancer doctor in Knoxville who agreed to remove it and his office would be contacting me. My head was spinning, my heart was pounding so hard I could hear it in my ears, I was nauseous, and my palms were sweating. It took everything I had to pull myself together and ask her to spell this out for me. I had to write it down. I don't remember much else from that conversation beyond me asking her multiple times, "What does this mean? Is she going to be okay?" She just kept telling me that "once it is removed, she will be fine." She was very calm. I was losing it. The call ended with her saying the skin cancer doctor would be contacting us to set up her surgery.
I can't even begin to explain all of the emotions and the fear that was coursing through my body. If it had not been for Sammy being there with me that morning and holding me together, I would have collapsed in the floor. My hands and feet were numb. I sat down at the computer and opened Google (which would once again prove to be a very bad decision). Because Pigmented Epithelioid Melanocytoma (PEM) is even more rare than CMN, it was almost impossible to find anything on it at all. My first search turned up "animal-type melanoma." Another link gave me "rare, low-grade variant of melanoma." What was this thing?! It wasn't cancer but the term melanoma kept popping up!
Fortunately, during my research on CMN, I found a Facebook group for parents of CMN children, children with CMN, and Adults with CMN. I went to the group but no one had ever heard of this before. The founder of Nevus.org contacted me on the phone and put me in touch with a pathologist he was very confident in. He did confirm that if the pathologist in Boston said that, then he was correct in his diagnosis but couldn't tell me anything more about it. One of the moms on the group is a dermatologist and she has a friend who is a pathologist. He was able to tell her that he knew of no one who had ever died from PEM. That was all I needed. We were going with that. No one had ever died of it! We were going to remove it and she would be fine! I would do no more research on that topic as the information was so limited, you only got worst case scenario. I didn't need worst case scenario at this point. I needed all of the positive I could get!
The doctor's office contacted us later that day to set up Khloe's surgery. We couldn't get that crazy mole off of her head fast enough. When the surgery was done, I remember sitting in a room off of the room they did the surgery in. She was crying. All I could do was cry. My poor baby was only a few weeks old and they were having to cut this mole off of her head. The doctor was amazing and his nurses were so great and supportive. One of them even gave Khloe an angel charm that will always be special to us. The following morning at 8:00 am, the doctor called me himself to tell me that it was still benign and that he was able to get it all! WHAT A RELIEF! I could breathe once again. I have asked every doctor we have seen if this is something that can come back or if more could come back and no one seems to know. Again, this is so rare, it isn't something there is a lot of data or long-term studies on.
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Khloe after they removed the PEM
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Decisions...
A few weeks later, we were in Cincinnati. One of the mothers in the nevus group (I would have been so lost without all of those amazing ladies. More about them later) was able to get us an appointment with another dermatologist who is affiliated with Cincinnati Children's who sees a fair amount of nevus patients. She looked Khloe over and said that she has a very normal looking CMN; however, she agreed that since Khloe's nevus could come off, it should. There was that word again: removal...The only way I had heard that a nevus Khloe's size could be removed was with tissue expansion. That was not something I wanted to do. The thought of it made my stomach ache. We were scheduled a little later to see a plastic surgeon at Cincinnati Children's hospital.
The plastic surgeon in Cincinnati said that he felt like he could do serial excisions (removing a small section of nevus at a time) over a year and half to remove Khloe's nevus. This gave us hope that maybe we could avoid tissue expanders. Unfortunately, this particular doctor had no before and after pictures to show us. Neither Sammy or myself was comfortable with that. It did, however, give me a sense of calm when we realized that removal may be an option for us after all. This was the first time I felt at peace about Khloe's birthmark since she was born. The whole ride home, Sammy and I discussed the pros and cons of removing vs. leaving her nevus and monitoring it.
Once I was home, I posted in the Nevus group about serial excision for a nevus Khloe's size. The feedback I got was not what I had hoped for. Apparently, when excisions are done on a nevus this large, it would leave quite a large, wide scar because the way the skin would pull as it heals. Keep in mind, Khloe's nevus is on her head. Hair doesn't grow on a scar. I remember sitting in the bathtub later that night (of course this is where I do my best thinking) trying to figure this all out. My husband and I both were having major reservations about tissue expansion; however, this was going to give her the best results. After the scare we had with the PEM, I couldn't imagine having to go through that again if there was another spot on her nevus that became a problem. I will be the first to admit I am a worrier and Sammy and my mom both felt that if we chose to leave her nevus alone and just monitor it, I might make my poor child crazy. So maybe I do agree with that a little. I was reminded of the sense of peace I got when I thought for a second Khloe's nevus was coming off earlier that day in the plastic surgeon's office. It had to go! Once I was out of the tub, Sammy and I had a long chat. We had made our decision.
While there are many reasons we have chosen to remove Khloe's nevus, the number one reason is to reduce the risk of melanoma. While we can not say 100% that removing it will bring her risk of melanoma back to what it would have been had she been born with no nevus, the thought is that by reducing the number of cells, you reduce the risk. The second reason is because of the PEM. No one is able to tell us if that could come back and we feel that by removing the entire nevus, the chances of it coming back are then reduced. Also, the skin on the nevus is very fragile. Khloe is constantly scratching and tearing it. I can't imagine never being able to brush her hair! Another reason is hair growth. While the nevus on the back of Khloe's scalp is covered by very pretty hair (that is growing in several different directions), the nevus on the front barely has any hair at all. It is unknown whether or not she will ever have any hair on it. I spoke with several adult nevus owners who experienced hair loss in their 20's on their nevus. I just don't want Khloe to look at me someday and say "Why didn't you get this off of me?"
Since the skin is a lot stretchier in younger children, it is advised to begin removal as soon as possible. Tissue expansion can begin as early as 6 months of age. We did have an email consult with a plastic surgeon in Chicago who is the top doctor at removing Nevi. However, we weren't comfortable being so far away from him should there be an issue during the process. Also, we have no desire to do the fills on our own. Tissue expanders are filled weekly with saline to expand and grow the new skin that will cover the area where the nevus will be removed. For more on tissue expanders, visit:
Tissue Expansion 101. Another mother in the nevus support group who lives in Nashville, TN, suggested we visit a plastic surgeon she met with in the hospital when her daughter was born and who will be doing her daughter's removal surgery. We immediately scheduled an appointment for a consult.
While in Nashville, we had the opportunity to meet a fellow nevus mom, her son, and her daughter, Khloe's Nashville Nevus sister, prior to Khloe's appointment. She is one month older than Khloe and has already begun her removal journey. I will be forever grateful to her for recommending this doctor to us and for sharing her daughter's experiences so far with her removal journey. It was such a blessing to be able to spend time with someone who was going through the same emotions and experiences that we have been dealing with! After, we were on to our consult with Dr. Caroline Chester, a plastic surgeon in Nashville with experience in nevus removal.We were very pleased with Dr. Chester. She also had some amazing before and after pictures for us to see. She spent a lot of time with us and answered all of our many, many questions.
On the long ride home, Sammy and I talked long and hard, once again discussing the pros and cons of removal and the pros and cons of monitoring. For Khloe and our family, removal is the best option.
Since finally making the decision to remove and getting "the plan" in place, I definitely became at peace with everything. Life was able to go on and has become as normal as possible with a brand new baby, three kids, a business, well, you get the picture. We went back to living life and getting to know our precious gift and newest member of our family!
We still have our moments where we (mostly me) freak out over something such as a cut on her nevus or a small change but that is where the wonderful mothers from the Nevus support group have come in. I can't thank all of you ladies enough! You are a Godsend and I know that God has a plan for all of us and has brought us all together for a reason. We would not be where we are today and have the knowledge that we have about CMN without all of you. I have grown especially close to another mother who I have yet to meet in person but I know I will really soon. Lauren's daughter Georgia is a fellow nevus owner and was born just four days after Khloe. Miss Georgia and her mommy live in Canada but plan to make the trip to the US to begin Georgia's removal journey in August. We can't wait for the girls to meet and become as close as Lauren and I have become. The girls even got their ears pierced on the same day! Yes, we planned it! Thanks, Lauren for always listening and being there for me when I am having a moment. You can follow Georgia's Journey at
http://www.sweetgeorgiagrace.com
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| Georgia (Left) and Khloe (right) getting their ears pierced |
I have to say THANK YOU, THANK YOU, THANK YOU to all of our family and friends who have stuck by us, prayed for us, and prayed with us. Thank you for your support and continued prayers for Miss Khloe. We love you all! We are truly blessed with an absolutely amazing support system.
The Amazing Adventures of Khloe
Khloe has been living it up! I can't even begin to tell you the wonderful personality this baby has. She is the happiest baby I have ever seen. She is such a character. Check out what she has been up to:
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| Yay! The Easter Bunny came! |
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| She loves the baseball field |
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| Supporting Big Brother's Baseball Team |
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| First trip to the beach! |
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| Her first Build A Bear |
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| With her brothers |
Six Months Old!
July 11th was Khloe's half birthday! We are so excited about all of the milestones that have been reached in just a few short months. However, this month is kind of bittersweet. It is the month that Khloe is to begin her removal journey. It was a lot easier when we knew it was four months away but now that it is here, it has been a little tough. Her nevus has become such a part of her that I don't even see it anymore and I do believe that I will feel a sense of loss when it is gone. I know that I will miss her "mole-hawk" for sure! I know that we are doing what is best for her in the long run but it doesn't make it easy. I do believe this will be harder on Sammy and I and her family than Miss Khloe. She will never remember any of it! I created this blog to keep our friends and family up to date on the removal process. I will be sharing her journey with you all and will try to update it as often as possible. I also hope to provide some comfort for other families who are going through the same things we were going through just a few short months ago. We ask that you please continue to keep Khloe in your prayers as she begins her journey. Thank you all so much! Much love and Many blessings!
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| Sweet, sweet baby |
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| Khloe's nevus today. The scar is from the removal of the PEM |
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| Khloe's "mole-hawk" |
