Eliza's Story told by Josh Singer:
Alisa and I were beyond thrilled to welcome Eliza Jane Singer on September 28, 2016! After 43 hours of labor (Alisa is next world tough), Eliza made her appearance into the world and immediately captured our hearts. We were in love from minute one.
It wasn’t long after she was born (read minutes) that we both noticed a large birthmark on the left side of her head with a round, red mole in the center of it. At first it almost looked like Eliza was born with a full head of hair on one side and no hair on the other side. One by one, the doctors and nurses at the hospital said that they had never seen anything like it before that day. Cue the worrying. Our OBGYN also said that he had never seen anything like it. Cue even more worrying. The neonatologist said he had never seen anything like it either. Cue the worrying and googling.
The hospital neonatologist spoke with colleagues at the medical college near Athens and we were pretty sure the diagnosis was a congenital melanocytic nevus (CMN). When we left the hospital, we had an appointment set up to see a pediatric dermatologist in Atlanta. Dr. Spraker, at Emory University, is fantastic. We loved getting to know her and have her medical expertise in this field. As suspected, Dr. Spraker confirmed that Eliza’s mark is a CMN. Essentially, Eliza’s large dark spot on her head is mole that is composed of melanocytes (pigment cells). For whatever reason during development (the cause for CMN is still unknown), Eliza’s body did not distribute her cells evenly throughout her body. Rather these melanocytes all collected in certain places, with the most notable being on her head. She does have some spots on her backside as well, but these are much smaller.
There are a few complications that are worrisome with Eliza’s CMN. The first is that patients with large CMN will also sometimes have melanocytes in their brain and spinal cord. This can be very detrimental, and even fatal, as it can greatly impair their neurologic function. The second concern is that children with CMN are more likely to develop melanoma. If Eliza’s mole was to transform and become malignant, often times there is not much that can be done.
When Dr. Spraker informed us of these concerns, Alisa and I both cried and prayed for quite a long while. It was hard news to hear, but necessary to know the risks. Both of these complications are relatively low risk (~5% each). However, to have a child with even a slight risk is scary. Treatment for a CMN is also not clear cut. The prevailing thinking on treatment, however, is to remove as many of the melanocytes as you can. This is done through a process called tissue expansion. An expander (think water balloon) is placed under healthy tissue and filled over the course of 3 months with saline to allow the skin to stretch around it. After three months, the expander is removed and the flap of stretched skin is used to cover the area where part of the nevus is removed. Each round of expansion will involve two surgeries: one to place the expander and the second to remove part of the nevus and place newly formed skin where it used to be. Needless to say, this was a lot to take in. We found the website nevus.org a very helpful tool in educating us on the process and referring us to doctors who do this surgery. While these surgeries are performed routinely on patients with CMN, surgery in a young baby is not without risk. Dr. Spraker advised us to go home and think on how we would like to proceed.
After much time talking, praying, and seeking wise counsel, we have decided to move forward with surgery for Eliza to have her nevus removed. Because of the extent of Eliza’s birthmark and the fact that it is on her head and forehead, we estimate that Eliza will have multiple rounds of expansion and removal. She is likely looking at around 8-10 surgeries total. We have found a doctor who has much experience in these surgeries and with whom we feel completely confident. Dr. Caroline Chester in Nashville has been a God-send (quite literally).
We cannot say thank you enough for your prayers and support. We do have a blog where we have written some things up in more detail for anyone interested. https://joywitheliza.wordpress.com/
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