By Brenda Gionfriddo
The day was May 11, 1999 I was excited yet scared for what was to come. I was scheduled to go into the Hospital at 7:00 p.m. to be induced. I was two weeks over due and ready. In only five short hours the said ” It’s a boy”. I was overjoyed; I already had a wonderful two and a half-year-old little girl and I hoped for a boy this time. Silence in the room and then whispers in the comer shattered my joy. I screamed out ‘~what’s wrong with my baby”. The doctors asked a few stupid questions and then I got to hold him briefly, he was beautiful I barely got to hold him at all when they took him away to the neonatal ICU.
A couple hours later they wheeled me down to see him. I didn’t see anything wrong with him; all I saw was a gorgeous baby boy which we named Jonathan. With still no information for my husband or me they brought me back to my room. A doctor came in shortly after that and explained that they believe what Jonathan had is a rare genetic skin disorder called Epidermolysis Bullosa (E.B. for short). The only thing to enter my mind at that moment was fear. Fear of losing him before I ever got a chance to know him. No one really answered any of our questions; instead they ask us if it would be okay to transfer him to another hospital that had more knowledge of this disorder. We agreed and I packed up my stuff hopped in my car and was admitted into the same hospital that he was so I could be with him.
After getting settled there a neonatal doctor entered my room with some answers for us. She said in a very blunt and to the point way” your son will have a really hard life, filled with pain and hardship due to this. He could blister by the slightest touch or trauma to his skin”. I thought to myself “Would I ever get to hold or touch my son, and if I can will I hurt him?”. I was then left alone while family went home. I must have cried for hours sitting by the incubator. I was not able to touch or hold him and tell him it would be all right. This all happened only 12 hours after his birth. I was tired and hurting, but was unable to rest. A specialist entered my room as I tried to relax a little: he told me that he would need to take a biopsy to confirm their suspicions. I then asked, can I ever hold him?”. To my relief he said, “Of course you can as soon as I finish”. I picked him up, looked straight into his eyes and he smiled. At that point my fear turned to joy and I knew no matter what we had to go through in his life we would be all right.
A baby’s smile can do wonders, but when Jonathan smiles even at times when he is in pain it gives my the strength and courage to face another day.