Charlie's Nevus Journey: January 2013

On December 23, 2012 at 3:02am, Charlie Lawrence Teague was welcomed into this world. Within minutes of his birth I realized that he had something abnormal on his forehead and head. Kelly and I were given a few moments alone to process the emotions that were flooding over us. I was shocked and very sad to see that my new precious baby boy was not the "perfect" little baby we were expecting. We were sent to our postpartum room with little to no answers of what was on his forehead and scalp. We were told a pediatrician would be in in the morning to talk with us but until then we found ourselves alone in a room with this new baby and our heads were reeling. Instinctually we both grabbed our phones and started Googling. BIG mistake! After freaking ourselves out we both agreed to stop until we met with the doctor.

Around 8am Dr. Shultze came in and informed us that Charlie had a large congenital melanocytic nevus. “Large” described the size, “congenital” meant that he was born with it, “melanocytic” refers to the pigment-producing cells that it is made of and “nevus” is another word for a mole. So essentially Charlie was born with a large mole on his head. We were told that he would need an MRI to rule out Neurocutaneous Melanocytosis (NCM) which is a condition where you have melanocytes (nevus cells) in your central nervous system (your brain and/or spinal cord) and this can cause problems such as seizures, developmental delays and even death in certain cases. We also soon learned that the 20-30 little spots all over Charlie’s body were called satellite spots. After the doctor left we turned to Google yet again and learned that there are many types of large nevi and there is about a 5% chance of it developing melanoma (cancer). Because of this risk they often remove the large nevi with the use of tissue expanders. We tried to remain optimistic and just enjoy our sweet little baby but I’ll admit it was hard. I hated looking at his nevus and kept a hat over it for the first few days.

When Charlie was 11 days old we had his MRI at Sacramento Memorial Hospital in Sacramento. He was scheduled to have an MRI of his brain and spine with and without contrast. Because he would need to remain perfectly still for the entire procedure they had to put him under general anesthesia which was pretty scary for us. We were told over the phone by the intake nurse that this MRI would be an outpatient procedure lasting about 1.5 hours, 30 minutes for him to wake up and then we would be sent home. So except for having to be put under it seemed like a pretty simple procedure. WRONG!

We arrived at the hospital around 12:30pm on January 3 and by 1:00pm he had his IV and they had him asleep. They then told us that it would be about 2-2.5 hours for the procedure. The waiting was torture! Luckily my mom was there with us and she was a huge support for me. When the anesthesiologist finally came to get us it had been almost 4 hours! We were taken back to the recovery area and shocked when they told us that because he was less than 2 weeks old he would have to stay for 12 hours overnight for observation. None of us prepared for that but knew it was probably for the best. As we waited for him to wake up we soon realized that he would not be waking up in the 30 minutes like we were originally told. They explained that because he had Propofol (the anesthetic) for so long his little liver couldn’t process it and rid his body of it. There were some scary moments where his oxygen levels dropped and they had to have doctors come hold his airway open. Kelly and I sat there watching them do all these medical procedure to our tiny son. We felt so helpless and scared.

Charlie came out if his MRI around 4:30 pm and ended up not opening his eyes for the first time until about 9:00pm. Once he was awake though he was VERY out of it. He hadn’t eaten since 10am and was so groggy he couldn’t nurse. It wasn’t until about 2am that he was “himself” again, eating and pooping like a newborn should. Kelly, my mom and I had one small chair in the pediatric ICU room to share. Needless to say, none of us really got any sleep that night. By 8am he was cleared to go home and we were outta there! The one bright spot in our night was our nurse leaked to us that she had seen the MRI report and everything looked normal. Whew! Huge sigh of relief. Our pediatrician, Dr. Vallero, called the next morning to confirm that Charlie was all clear and his MRI looked great.

Four days later on Jan 7 we headed to UCSF Pediatric Dermatology department for a consult with Dr. Frieden. We had heard so many amazing things about Dr. Frieden and the entire Pediatric Dermatology department at UCSF so we were so excited to finally get a true diagnosis from someone who specialized in this type of condition. Dr. Frieden confirmed most of the things we knew already (he had a large CNM, his MRI was normal, there was a 5% chance of melanoma developing, etc). Removal is not her specialty (that is the plastic surgery department) but from a medical standpoint she seemed to think that we should remove the forehead part of his nevus and leave the scalp. The scalp nevi often fade and hair grows over them so they are less noticeable. So we left with a referral to Dr. Hoffman, the plastic surgeon (also at UCSF) and we have an appointment with him on February 26. Meeting with him feels like the last part of the puzzle in terms of getting all the answers we need to be able to make an informed decision about Charlie’s future.

So here is where we are today…

We are faced with a heart wrenching decision about whether to remove or not remove. Charlie’s nevus goes down onto his forehead on about half of his face and that section of his nevus has lots of unsightly bumps and lumps and dark spots. It is also growing “nevus hair” which is very different than regular hair. It is coarse, wiry and has a mind of its own. So, cosmetically we would like that part gone. Medically, that risk of melanoma will always be looming over our head for his whole life. We have already heard stories of head/facial nevi developing melanoma even in small babies. SO scary. So if we choose to remove we also have to decide whether to remove all of it (probably at least 4-5 surgeries over the first few years of his life) or to remove just the forehead section. If we chose to remove, when Charlie is about 6 months old they would place tissue expanders, which are like a balloon, under his skin and scalp. These are slowly filled with a saline solution over time to stretch the normal skin and hair. After the tissue expanders have stretched the skin to where they doctors want them to be they are removed, the nevus is removed and the normal skin and hair is stretched to basically reconstruct his head and face. Again, this would often be done over multiple surgeries, each time removing a section of the nevus. This path of removal seems like a long road of surgeries, hospitals, huge bubbles on our child’s face and head and an early childhood filled with medical procedures. On top of all that, Charlie will have large scars most likely across his forehead and throughout his scalp.

If we choose not to remove then we are choosing to live with the risk of melanoma and the repercussions of Charlie having a huge mole on his head and forehead. We all know that kids (and even adults sometimes) can be very mean and so we do consider the cosmetic part of it a deciding factor.

To be perfectly honest, I feel like both of these options suck. I hate that we are in the place that we have to make this decision in the first place. Both options feel like a lose lose situation. Kelly and I are not going to make any decisions until we have met with Dr. Hoffman, met with Dr. Frieden again and also consulted other doctors across the country who are experts in this field. If we choose to remove, we would start around 6 months so we do plan on making some decisions in the next few months.

I am setting up this blog to that we can keep our friends and family updated as we travel on this journey. We appreciate all the support we have received so far and I know we will continue to need much support over the coming months and years. And without further ado, here are some pictures of our handsome boy!

Here is a good picture of his nevus (taken just after he was born)