Thank you for reading my Granddaughter Alexandria's Story! I am Alexandria's Memaw and I am reposting this story written by my daughter to help in anyway I can to ease the burden of this journey ahead. My husband and I found out we were pregnant the day after we tackled our longest hike in the white mountains, the 8 mile Franconia Ridge Loop. I remember thinking that our little bean was going to be a strong one since he/she hiked all that way with us. Little did I know just how much that little girl was about to rock my world and how much she was about to change our family…for the better. I had a very normal pregnancy without any complications and my delivery was a breeze compared to my first born son. When Alexandria was born, I kept asking if she was okay and the nurses just kept repeating she had a large birthmark. I thought to myself “So what? Just let me see my baby, what’s the big deal?” When I first saw her I couldn’t believe how beautiful she was, all I saw were her amazing little eyes. When I realized what they were talking about and I froze in panic. She had a large pigmented region that went from half of her scalp, down her neck, around her shoulders/collarbone, and down half her back. She also had many smaller moles scattered all over her body. Within a few hours I was told she had to be transferred to a larger hospital because they didn’t know what was wrong with her and she needed to see an experienced dermatologist. Soon after, pediatricians and midwives started coming into our room telling Justen and I that we should “prepare ourselves, because it was not going to be good news." One pediatrician told us that she would likely have a short and very difficult life ahead of her and what she had would cause severe neurological defects. It took about 6 hours for Justen and I to finally be transferred to the hospital where Alexandria was in the NICU. When we arrived, we were in absolute shock and had been sobbing for hours. The dermatologist met with us right away and he finally told us what Alexandria actually had: Congenital Melanocytic Nevus (CMN). A congenital nevus is basically a birthmark that you are born with and they are actually quite common. However, the type Alexandria was born with is known as a “giant” congenital melanocytic nevus which only occurs in 1/500,000 births. It is not genetic and there is no known cause, it is a sporadic genetic mutation that occurs after fertilization (6-12 weeks gestation). Unfortunately, CMN does come with additional complications other than the pigmented skin legions. People with large nevi, and also people who don’t have a large nevus but who were born with numerous smaller congenital nevi, can have melanocytes (nevus cells) in their central nervous systems (their brains and/or spinal cords). This condition is called Neurocutaneous Melanocytosis (NCM) and occurs in about 7% of those who have CMN. Alexandria had an MRI at 6 weeks old and it came back clear, we were told to still monitor her development with a neurologist, but it’s promising that she had a clear MRI. The other complication for those with CMN is melanoma. The experts agree that the risk is around 2-3%, but for those with skin cancer in their family (like me) it is higher. The nevus skin can also be fragile, chronically itchy, produce thick hair, and some may even lack sweat glands which can cause overheating. For more information on CMN please go to www.nevus.org . After seeking multiple opinions from all over the country, Justen and I have decided to remove portions of Alexandria’s giant nevus. It is quite a complicated procedure, but we feel that in the long run it is best for our daughter. The next few years are going to be difficult and we will have to fly back and forth to the hospital where the removal will take place, but I know we will get through this with the support of our friends and family. We begin surgery this coming January and we anticipate her having four surgeries next year. We will then make a decsion whether or not we will continue with removal or not. Any funds donated will go to travel and hotel expenses as well as any medical costs that are not covered. I believe this little girl is going to show me just how strong she is and I know she is going to do amazing things (including hiking that trail with me one day). My long term goal is to raise awareness about CMN and to support the wonderful organization which was our lifeline during the first few weeks: Nevus Outreach. I want to try and hopefully prevent another family going through the heartache and stress of misinformation that we did.
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