I wrote this last Saturday, December 8th and sat on it for a week, trying to decide if I was going to publish it or not. It seems even more relevant in light of the tragic incident in Newtown, CT because I think many of us are asking “Where is God in this?”
I’ve debated whether or not to share this, waffled back and forth as to whether it is too personal. I have shared some very personal things here on this blog, most notably my struggle with bulimia and anorexia. But those struggles are over, this one is very present, very real and very raw.
I choose to share because I need to write it down. I need to wrangle my thoughts into words. I can do words. Perhaps that is why I am a compulsive list maker, I have to see it to be able to do it. I guess I have to see this on paper to know that I can make it through.
Jack was born a completely healthy and normal baby in every aspect except for one: he has a skin abnormality on his back called agiant melanocytic nevus, it sounds scary (and it kind of is) but it is basically a large congenital mole. We didn't see it until about twenty minutes after his birth. Jack was born in the tub and was immediately wrapped up and placed on my chest after delivery. Neither Mark or I had looked at his back: we were so focused on his precious face. Jack had passed his APGAR test and was nursing quietly in my arms when the midwife approached us and said she noticed something as she was delivering Jack: a large brown patch on his back. She had no reason to believe it was serious because in every other way he was completely healthy and was responding as a healthy newborn should. When she said “large” I initially pictured something the size of a golf ball, a birth mark of sorts. That’s OK. It’s just a birth mark. I thought as she un-wrapped his swaddle. But the mark was much larger than a golf ball, it covered 80% of his back. And it wasn’t the light brown color I pictured, like the birth mark Sophia has on the back of her arm. It was dark brown, almost black with small raised tumor-like bumps. I didn’t really react. There was part of me that thought it would just fade with time. Like I could wipe it off or something. It is strange how your mind works when it is faced with something that disturbs your expectations.
I had expected a perfectly healthy boy. The ultrasound and every prenatal visit I’d had indicated that he was thriving. And everything about the little face I’d been staring at for the past twenty minutes told me that he was perfect. Seeing the mark on his back and listening to the midwives identify it as a giant melanocytic nevus shook all that up. Turned it upside down. There was something wrong.
The condition itself is rare. Though they can be different sizes, a giant one like Jack’s is extremely rare: one in 500,000 births. The midwives had never seen it. Our pediatrician had never seen it. It appeared to affect only his skin, in all other regards he was healthy so we took Jack home. We had very little information but an appointment to meet with a pediatric dermatologist who could tell us more. I did a little research online, but stopped after a few clicks. Most of what I was read scared me: “melanin cells in the brain,” “risk of seizure.”
The second night we were home, Mark and I were sitting together on the couch watching little Jack sleeping peacefully between us. The tears flowed. When something is wrong with your baby there’s a sense of loss. Loss of innocence. A hurt you feel for your little one: that everything isn’t OK and you don’t have the power to make it OK. A disappointment that your expectation of a healthy child is not the reality that you are experiencing. There were a million questions too. How serious is this? Will he have seizures? Will it stay this size or grow with him? Can it be removed? What is the surgery like? Did I do something during my pregnancy to cause this?
For the next few days I thought of my little boy growing up, being made fun of for the mark on his back. Struggling to feel confident in himself. It broke my heart and brought me to tears every time. So I’d kiss him and cuddle him. I whispered to him that I loved him, every bit of him.
Five (very long) days after Jack was born we were sitting in the dermatologist’s waiting room. Waiting. For forty-five minutes. Finally, we met with the doctor. He identified the mark as a giant melanocytic nevus: a congenital mole that forms when the melanocytes (melanin cells) cluster together rather than being evenly distributed. The first thing he said was, “I want you to know there’s nothing you did to cause this.” It was comforting. I took a breath. He went on to explain that it happens in the first twelve weeks of pregnancy caused by a defect in embryological development. It is not hereditary and there is no known prevention. The major risk factors of a congenital nevus are increased risk of melanoma, a potentially deadly skin cancer. And a risk of neurological involvement: as in melanocytes (melanin cells) could be in the spinal cord or brain. This is called neurocutaneous melanocytosis (NCM). If the former is the case, surgical removal is recommended and the child has a normal life. If the later is the case then the child could experience seizures and other neurological complications and removal of the mole will do nothing to change the neurological complications. Approximately 93% of people with giant melanocytic nevi do NOT have NCM and of the 7% that do have NCM, 60% do not have complications despite the presence of melanin in the brain and spinal cord. But there are a few cases, about 1% of people with giant nevus who have neurological complications they cannot survive.
The dermatologist seemed to think that Jack, because he was nursing, pooping and sleeping normally, did not have any neurological involvement. He gave us a rough idea of what lay ahead: an MRI to determine if Jack had any melanin in the spinal cord or brain and if not several surgeries to remove the nevus, reducing his risk of skin cancer. At five days old there isn’t much that you can do so the doctor recommended we see a specialist at the Children’s Hospital at Dartmouth (CHaD) after Jack had regained his birth weight.
Two weeks ago we drove up to CHaD and met with a Pediatric Plastic Surgeon who is familiar with giant melanocytic nevus. After examining Jack he mapped out a plan for removing the affected area. Pending a clear MRI, Jack will have two major surgeries: the first will be to insert the tissue expanders in his back, the second to remove the mole and stretch the new tissue over his back. The tissue expanders are small bladders with ports that will be inserted above and below the mole on his back. Over the course of 8 weeks we will slowly inflate these balloons, via the ports, with water. The balloons will slowly expand with each insertion of water. The doctor compared it to the way the tissue on a woman's belly expands with pregnancy. As the balloons grow the tissue will recruit more tissue cells and grow too. At the end of eight weeks the balloons will be quite full and large (like two small nerf footballs). But it's necessary to get the healthy skin that they will need to cover over the area that they remove. The second surgery will be at the end of the eight weeks and will involve the removal of the tissue expanders along with the removal of the mole.
But the first hurdle is the MRI on January 22nd. It is new, uncharted territory for Mark and I: watching your little baby undergo intense medical treatment. Everything in me tells me that his MRI will be clear. He coos, he smiles, he follows my movement he’s even reaching for toys. I see a healthy, vibrant boy. I don’t see a boy with a problem. I pray that I am right.
I’m not sure how I will handle it: watching them take him away. I’ve wondered too, after all the surgeries are done and the nevus is removed will I still worry? The truth is that this all sucks. There is no way around it. We have to face it. And it is hard. I’ve tried to be thankful. Thankful that it is not on his face. Thankful that it is not more serious. But honestly being thankful that it isn’t horrible is not exactly helpful. It is little consolation for someone who is suffering to be thankful that it is not worse. And I’m not trying to make light of situations that are worse. But the truth is, right now, this is MY worst. It may or may not be my worst in a few years. But anyone’s worst case scenario is hard. I can try to be thankful but that doesn’t make it any less hard than it is. And to be completely honest, I’ve found myself asking “Where is God in this?” Where is the God in kissing my infant son goodbye as they take him into surgery? Where is God when I inject a balloon with water, stretching my little baby’s skin? Where is God when we have to leave our daughter with a sitter so we can attend our son’s surgery? Where is He? I’ve asked this before. When I was in the thick of my struggle with anorexia and bulimia, so tormented by my addiction that I saw no way out. And even though it feels like He isn’t there I’ve found small quiet answers to my cries. God is in the moment when Mark wraps his arms around me tells me that we will get through this together. God is in the sweetness of my daughter who probably thinks that all little brothers are born with “pickles” (she really means freckles) on their backs; who somehow knows I’m having a hard time and sweeps up the crumbs of her granola bar all by herself. God is in the support of our family and friends. God is in Jack’s precious smile and his sparkly eyes and his round little cheeks. Because all those things are good. All those things are LOVE itself. And they are just as real as the pain and the hurt and they are a thousand times better.
“Everyone who loves has been born of God and knows God...because God is love.” 1 John 4:7&8