As any new parent, all I wanted was for my baby to be healthy and be able to have a “normal” life. My worst fear throughout my pregnancy was that my baby would be sick. Then that fear became reality for my husband and I.
Alexis was born on March 26 and it was evident at birth something was wrong. From this moment, our world completely changed. She had de-gloved feet, blisters in her mouth, and missing skin on her back, hands and stomach.
At first the nurse said “it’s normal – babies who are overdue; sometimes their skin peels”. But I knew this was more than just “peeling” of the skin. These were wounds, wounds that looked so painful.
Alexis was admitted into the NICU ward at just three-hours-old and was bandaged up like a little mummy. We couldn’t even touch or hold our new baby, the baby we went through multiple rounds of IVF to have.
I still remember the words that came from the doctor: “We believe Alexis may have a rare skin condition called Epidermolysis Bullosa (EB). She will be bed ridden for the rest of her life and you will be in hospital for many more months.”
My heart crushed into one thousand pieces. I have never cried so many tears. Having a baby should be a joyful and an exciting time of your life but for us, it was a scary and unknown journey we were about to walk. I didn’t know if I was even strong enough to care for a child with such high needs. But the mother inside of me took over, I became a different person in less than 24 hours.
When Alexis was transferred to Sydney Children’s Hospital we saw an amazing team of doctors, nurses, dieticians and dermatologists. They explained EB to us and gave us so much hope. Finally, after the emotional horror of the last 24 hours, all we needed to hear was everything would be okay, and this is exactly what happened.
Alexis was diagnosed one week after birth with Recessive Dystrophic Epidermolysis Bullosa (RDEB). She is the first member of both sides of the family to have EB.
We were told Alexis would have to have daily dressing changed for the rest of her life, that her toes and fingers may web due to multiple injuries, that she will lose her finger and toe nails due to blisters under the nail bed and suffer excessive scarring all over her body.