After 39 weeks of a perfectly promising pregnancy and hours of labor, my baby was finally placed on my chest. He was covered in more white gooey mess than I had ever seen, but even through the goo he was beautiful. We decided to name him Gabriel after the solider of God’s army. Little did we know what a fighter he would be and how suiting this name would be for him. After Gabriel was cleaned and brought back to the room, we noticed small wounds. One on his wrist and the other on his ankle. I asked the doctor what they were from and I was told that he must have gotten them during labor and not to worry about them. I trusted the doctors advice and dismissed the claim.
We were sent home on a normal discharge schedule and resumed life with our new love. A few days after we got home, Gabriel’s heels started to blister. Both of his little heels were entirely covered in blood blisters. We called the doctor who had us come in to the office where he looked at the blisters and told us that it was probably nothing, just to come back at our check up and hopefully the blisters would go away. Needless to say that wasn’t the case. Gabriel’s heels were the same. Not knowing what to do, the doctor made an appointment at Children’s Hospital with a dermatologist, but the appointment wasn’t for months. I couldn’t wait that long. My new born was in pain and I didn’t know what to do. I called Children’s myself and begged for an earlier appointment. They made it for a lot sooner.
That morning we were so nervous as we drove to Birmingham with our six week old son in tow. We wanted answers, but were also scared to know what it might be. We finally made it to see the dermatologist who took a look and decided to do a quick test. She told us she would twist a pencil eraser on Gabriel’s leg to try and induce a blister. The next thing I knew, my baby was screaming. The skin just tore off as soon as she turned the eraser. The dermatologist decided to take a biopsy and send it to the lab. Yet another painful test. The doctor told me she thinks it’s Epidermolysis Bullosa. but she warns me not to Google it.
Thanks to smart phones, as soon as we got into the car I began reading: “lacking protein, live in bandages, painful, potentially fatal.” As the tears fell freely, it went on and on. I called family and tried to explain what the doctor had said, all while praying it’s just sensitive skin, not this awful disease.
A few weeks later our fears were confirmed. Gabriel has EB.
Gabriel is three years old now. We have gone through more bandages then I had ever thought possible. His blistering progressed from his heels to hands, then elbows, legs, knees, arms, and one constant blister on his back. Occasionally his lips and ears will blister. We still have a problem with his little bottom tearing when going potty.
But all that being said; our son is a fighter. He’s fought through infection after infection. He’s triumphed through bandages and has yet to let it slow him down. Gabriel laughs and sings and plays. He is such a happy boy. Our little guy is so much stronger than I will ever be. Even at three, he has taught us so much about life. Who knew when we named him Gabriel that he would be such a solider. He is our hero!