When my daughter Zoe was 13 days old I fainted after seeing a blister on her ankle. I knew what EB was and I knew right away what the blister meant.
My husband David has the most severe type of EB Simplex. When David was a child he was incredibly severe, was born raw and was fed through his head after birth.
Zoe has two older siblings, Josh who is 20 and a sister Jamiee who is 14. Zoe wasn’t planned. I had IVF for Jamiee so I didn’t think it would be a possibility and we were told Josh was a miracle child. Neither Josh or Jamiee have EB.
Zoe was born at 30 weeks in a neonatal intensive care unit. I was rushed by ambulance to hospital but they couldn’t stop the birth. Thankfully there was no damage from intervention through her being a premi. She was born with her skin completely intact, but she had Pneumothorax and her lungs collapsed because of being a premi and she then had to be incubated.
After Zoe’s first blister, a bit more of her skin broke out but wasn’t too severe. At the time the Doctors didn’t believe it was EB and after going through that process I’m not surprised that people with EB get diagnosed with eczema. As Zoe got older though it became more evident that she had it and then it became the most severe type EB Simplex. One day I rang the hospital to see how she was and they told me she had blisters on her back. It turned out that she had wind and the nurse tried to bring the wind up by rubbing her back. Even drinking a bottle you needed to be careful. Before every feed, I used to put a cream all around her mouth to avoid trauma to the side of her mouth.
Because of my husband, I knew all about EB which did make it easier to understand what I was in for. I can’t imagine being a mother with a child with EB and having no idea what it is. Because of my knowledge I was able to help the medical team in caring for Zoe.
David told me that infancy was bad for him and as a teenager he had to go to hospital. He teaches martial arts now though and has also played football. David is a builder, we have our own building business and David project manages the jobs, manages the trades and clients etc. In the last six months he has been getting new wounds. As he is getting older, his skin is starting to break down again and he can no longer go out and do the gardening.
Josh and Jamiee are wonderful with Zoe, who’s now 12. Jamie helps Zoe at school and helps her when she goes to sick bay. Josh picks Zoe up from school sometimes – he really looks after her. She’s his little sister and I think a bit of it too is because of her condition.
Zoe is very tiny – small but mighty. She is a little pocket rocket. Very strong willed with a big personality. She’s thriving now. She made the table tennis team at school and she has a wonderful group of friends. There are some barriers though, for example she wears a different school uniform and some days she can’t write with a pen. I also needed to have someone with Zoe when she had her school needles to make sure they didn’t put any bandaids on her. She also can’t wear the school shoes – she needs the perfect shoe. We don’t get them made but we shop around for the best shoes and Skechers are working well for her at the moment. The school is great and very willing to find work-arounds so that Zoe can participate.
Zoe is very forthcoming about her EB and accepting of what she has. She is very good at communicating about the subject. She does have some sad days but overall she is very good with it all and happy to educate her friends about it all. She’s giving a talk soon at school to her religion class about EB, what it is and how it affects her.
David and Zoe have very similar interests which makes them close, yet they are so different. They play table tennis together but they rarely talk about EB with each other. David suffered a lot more internally than Zoe, however they both have a mix of internal and external wounds. If she has a blister that she can’t pop herself, she will get David to help her.
DEBRA is a wonderful support and our EB nurse Lauren is amazing. DEBRA funded a wheelchair for Zoe when she was little, they assist with sourcing creams, fund two pairs of shoes a year for EB kids, they help with any questions we hav and help every way they can. We’re so thankful.
