My son, Matthew was born on 3/17/24 and was clinically diagnosed with Epidermolysis Bullosa (EB) within an hour of birth. I had a normal pregnancy with no complications other than high blood pressure the day I was induced. I did have a 38-hour long labor and ended up having a c-section.
Matthew was born with an open wound on his entire left foot. His dad and I were immediately questioned about skin disorders that run in the family. We were both unaware of anything. Matthew was taken to the NICU and Dermatology was consulted. Within the hour, we were given the devastating news that he also has blisters and sores all in his mouth and on his lips. The dermatologist told us, this is EB, but we need to do genetic testing for an official diagnosis. Matthew developed blisters on his elbows, knees, heels, and every finger.
We have spent his whole 2.5 weeks of life navigating life as new parents and dealing with this very unexpected diagnosis. We go to doctor after doctor and spend lots of time doing dressing changes on a screaming newborn. We worry about finding new blisters each and every day. Even through all of this, Matthew is such a happy baby. We are over the moon and would not want him any other way.
Something that I wish people would know about EB is that just because Matthew has dressings on every limb does not mean he is contagious. He is as healthy as can be. He just has very fragile skin. It is scary but we are hopeful to lead as normal of a life as possible.
- Jessica, Mom to Matthew
debra of America is honored to have supported Matthew and his family through our New Family Advocate Program and other services. Our New Family Advocate Program serves as a lifeline to new families when there is nowhere else to turn, providing essential education, wound care supplies, and ongoing support.
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