Teagyn was born on Sept. 19th, 2013 at 4:04pm. We immediately knew something was wrong when the doctor didn’t place my baby on my chest after I had delivered. It was the scariest moment of my life.
Teagyn was born with no skin on her feet and blood coming from her mouth. No one had ever seen this before. Soon after she was born she was transferred from St. Mary’s Hospital in Leonardtown, to Georgetown University Medical Center’s NICU in Washington D.C. The doctor that came arrived on the helicopter told us he believed Teagyn had Epidermolysis Bullosa. I didn’t want to look it up until the diagnosis was confirmed.
When I was finally able to go up to GUMC to reunite with my baby after two days of being separated it was devastating. Now, not only did she have no skin on her feet but she had huge fluid filled blisters all over her body. Nobody, at the time, knew that the blisters needed to be drained so they didn’t get larger. As the days passed it seemed like the blisters continued to grow and appear.
After nine days of being in the NICU, we finally got to take our baby girl home. We were told that the diagnosis wouldn’t be confirmed for a few weeks but the doctors were 99% sure Teagyn has Epidermolysis Bullosa.
We finally looked up EB and it was scary. We needed to learn as much as possible to take care of our baby the best way possible.
Now she seems to be striving. Her feet are still taking their sweet time to heal. They seem to start to look really great, and then all of a sudden, they are blistered again. The rest of her body looks a lot better.
No one expects something like this. I don’t think anyone can ever really prepare for EB. We just take it day by day hoping for the best. Hoping for a cure……