Jayden was born on 06/11/13, at 35 weeks. My pregnancy was uneventful until the day he was born. As they were wiping him, I noticed he was missing skin on his arm and legs. The NICU physician wrapped him and brought him to me. I kept asking, “What’s wrong with him?”, and no one answered my question. One of the residents said, “Just look at his face. Don’t worry about his arms and legs.” At that time I knew something went wrong and they just wouldn’t tell me what went wrong. When I got to the recovery room my head felt like it was going to explode. I asked myself so many questions. Was is something I ate? Was it something I did? Is he going to make it? I was crying nonstop and was full of guilt about what my son would be going through.
I requested that The NICU attending come to talk to me about his plan of care. I asked her what was wrong with him. She said “Epidermolysis Bullosa”. She took my iPhone and wrote the correct spelling for me. I immediately went to Google and saw all the horrific images. Automatically I thought to myself this is a death sentence.
The next morning, I went to the NICU to visit him and walked into two nurses doing his wound care. He was in excruciating pain despite receiving three different types of pain medication. The dermatologist came and talked to my husband and I and we gave her consent to do a skin biopsy to confirm the diagnosis. He was getting bottle-fed, and the nurse had to apply Aquaphor to lubricate the nipple to prevent blisters in his mouth. By the second week. it was inevitable. He had huge blisters in his mouth and he required a feeding tube to take his formula. By then he had lost 80 percent of the skin on his body and was losing a lot of fluids because the blisters were the size of my palm. His dressing changes used to take 4 1/2 to 5 hours to do with at least two nurses and myself doing it.
Three weeks later, the biopsy result confirmed that he has Junctional Epidermolysis Bullosa Non-Herlitz. There are two sub-types of Junctional EB. The Herlitz is the most severe sub-type of Junctional EB. While we waited for the biopsy results my prayers were, “God please let it be a mild type of the disease. Give him life and I will do the rest”.
He stayed in the NICU for 28 days then he was discharged home. Since his NICU stay he has been in the pediatric ICU on four different occasions for dehydration, infection, and/or respiratory distress. He has had four surgeries: Two hernia repairs, surgery to correct reflux and surgery for a tube feeding. We traveled to Cincinnati Childrens Hospital back in January for him to be evaluated by a team of doctors, therapists, nutritionists, wound care nurses, and a social worker.
It has been an emotional and financial roller coaster to care for him because he has special needs. He requires frequent dressing changes to prevent infection of his wounds. He is on several medications to manage his pain and itching, sometimes antibiotics, and also three multiple types of vitamins. He remains strong fighting EB and smiling throughout the process. He has a loving family, most importantly is his 4 year old sister who loves him more than anything in this word. She calls him “my son”, “Don’t let anything happen to my son mommy”, ” Be careful so you don’t hurt him mommy”. We continue to pray for a cure and any treatment that would change his life for the best. I asked God to give him life and I would do the rest; God gives him more than life. He’s our little WARRIOR.