My Son Was Born With A Rare Skin Disease That Took His Life And Made Me Question Mine
It was a beautiful disaster.
Felix was born on the first Tuesday in January, minutes before 2 p.m. I was scheduled for an induction, but to my delight, he came exactly on his due date and without Pitocin. It was one of the best and worst days of my life.
He weighed 5 lbs, 15 oz, and was 18.5 inches long. His eyes were wide, beautiful, dark. He looked so much like his older sister Isla, it made my heart sing. We locked eyes almost immediately and I knew that he saw me—all of me. He was special, scarce, a rarity, I just didn’t know why yet.
His button nose and little chin complemented his cute face, which was adorned with dark full hair. I finally had my son. After nine grueling months, I finally had him.
He came out without making a peep. Quiet, calm, charming, alert.
He was ready to take on the world, so why did I have this sinking feeling in my gut? Why had my heart migrated south to my stomach? Why did I feel immense dread? Was it my mother’s intuition or anxious tendencies?
My eyes caught a glimpse of his left hand. His pinky finger was bright red. Breathe, Erin. It’s birth matter, and once the nurses wipe him down and place him back in your arms, he’ll be fine, safe, you’ll see.
But then I noticed it wasn’t just his finger but the entire top of his left hand. It was raw as if the first few layers were freshly burned off. His fingernails and tips were black, a stark contrast to his pale unblemished skin, and something was dangling from his mouth.
None of it felt right, and of course, none of it was. We needed to get out of there.
In less than 24 hours, Felix was transferred to Mass General Hospital. His condition was progressing at the same rate as my concern and love for him—fast. His skin was breaking down on his wrists, hands, ankles, and feet. He had large white bumps on his tongue, open wounds on his extremities, and scabbed lips from breastfeeding.
His dad rode in the ambulance with the men and women dressed in bright blue flight suits and backpacks. One was tall and wide with glasses, the other thinner and older but just as tall, and the woman had her long hair pulled back in a low ponytail, a sparkly diamond on her left ring finger. She was holding a notebook, or maybe it was a clipboard with information about “Babyboy Jean.” They looked us both in the eyes and told us, “He’s a fighter, he’s going to be okay,” and I wanted nothing more than to believe that was true.
I touched the glass of his isolette crib and sobbed.
Felix was rolled off into a back hallway and I returned to our delivery room alone. He went south and I stayed north. Separated already, it felt unnatural. It was unnatural.
As a serial hypochondriac, I started googling his condition in the early hours of our first night together and stumbled across something dreadful. A genetic disease that causes fragile, blistering skin. The website said, “Blisters may appear in response to slight injury, heat, rubbing, scratching, and adhesive tape. Symptoms include skin that blisters easily and blisters on the hands and soles of the feet.”
I thought “Okay, we can do this, he’ll wear tall tube socks like his dad,” but then I scrolled further down the page on my iPhone. “Treatment includes wound care, pain control, controlling infections, nutritional support, and there is currently no cure.”
And then there it was: “Life expectancy ranges from early infancy to just 30 years of age.”
Felix was just born and I was already pondering and planning for his death.
Felix’s pregnancy was uncomplicated—full of morning sickness, but uncomplicated. We closely monitored his growth because his older sister was on the smaller side and I don’t show like most women. There was also a potential that he could have a cleft lip or chin, but there were no red flags. No flags at all.
He was expected to be healthy and that’s what we planned for. His genetic screening was normal. There was no baby shower, but his nursery closet was full of diapers, clothes, socks, sweaters, fleece jackets, and winter hats. There was marinated Teriyaki chicken and lasagna waiting for us in the freezer. The bassinet was set up and situated right next to the bed and I bought a reading pillow at Target to support my back through the season of endless nursing. A jar of peanut butter and oatnut bread was stowed in my hospital bag next to Felix’s going home outfit.
But that was a life we never got to live.
Felix was born with that dreadful, rare genetic skin disease I found on the internet. Holding him against my bare chest, a physical act of love and means of comfort, caused his skin to blister and fall off. Several nurses lifted him from his isolette crib and placed him atop me whenever I wanted to hold him in the hospital. He was naked except for a diaper and paper blanket and covered in so much Vaseline that he would slide from my collarbone to my pelvis and need to be resituated again and again.
On February 1st, Felix was officially diagnosed with Epidermolysis Bullosa (EB). EB explained why his skin was progressively getting worse and as delicate as butterfly wings. It’s the worst disease you’ve probably never heard of. It affects 1 in 500,000 births and very few unaffected people even know about it, myself included. So rare that it is not tested for in early pregnancy, but so awful that it absolutely should be.
As a mother, I always thought it was my responsibility to teach my children, guide them, and help them navigate this life. But with Felix, the roles were immediately reversed. He was teaching me; in fact, he’s still teaching me from somewhere out there in the great beyond. I like to think he’s nature, a passing breeze, a beam of sunlight, or even living safely in a different fold of time and space with a direct line of sight to me. Somewhere among the stars, yet close enough to whisper “I love you” into my ear while I lay in a dark, cold, quiet hotel room in Florida.
Felix would have been almost four months old as I sit here and write this today. I wonder what milestones he would have hit. If he would have been supporting his head, smiling, and rolling over. But instead, I’m left here learning painful lessons about myself, writing letters to my dead newborn son, and surfing the endless waves of grief.
I’ve selfishly taken my body for granted for the past 34 years. Loathed it, even, because I don’t like how wide my hips are, how gangly my arms are, the shape of my face, the scars on my knees, the size of my nose. Even though this body, these long fingers typing on the keyboard in front of me, these eyes, this skin, are gifts and a means for me to experience this physical world until it can’t anymore.
Felix’s absence reminds me that life is happening right now, like right now. You can’t plan it all to the letter. You can’t position yourself to always be three steps ahead. You can’t slow down time, or speed it up, or dictate how much of it you have. You have to accept that you’re not in control.
So, write the book.
Chase butterflies and convince yourself that the solar flare in photos and prisms of light on the wall is him.
Say, “Hey, can I tell you something? I love you,” a thousand times a day. Go in for the kiss, take the trip, and cry on the shoreline.
Work from his nursery and explore trying again. Linger in the doorway at bedtime and paint the front door green.
Learn to skateboard.
Feel the feelings, even the ones that haunt your very existence and make you question everything you thought you knew to be true.
Dance to Bowie, chase her around the island, and tease him for putting a gallon of water in the tea kettle.
Take the Zoloft or don’t.
Watch the videos of you kissing his forehead and buy the gold locket and glue his picture inside.
Do it all and do it now with gratitude.
Love yourself for the first time. I know it won’t be instant, but try to appreciate the skin you’re in—it keeps you safe and allows you to make something of yourself and your time here. It provides you with an opportunity to share your story and, more importantly, his.
Leave a dent, even if it’s no bigger than a green pea.
And if you can’t do it for yourself, do it for Felix.