We were relocated that same day to the NICU Care at Royal Women’s Hospital at Randwick by this stage all Victoria’s limbs were bandaged. I was sad and overwhelmed. I had just given birth, and I was in an unknown area with people I didn’t know and a little girl I couldn’t hold. The nursing staff were so kind and allowed me to stay while Victoria was a patient there before being moved to the Sydney Children’s Hospital one week later for further monitoring and investigation and again allowed me to stay at the Ronald McDonald House.

I met so many people, doctors, specialists, midwives, dermatologists, paediatricians, some I can’t remember but when you have that first person or team come to you and tell you this is what we think it is, this is what we can do, you’re not alone, you’ll never forget them. Ash, Bec and Artiene and more. the best team I could have asked for in this life to look after baby Victoria.

We were discharged after 2 weeks, and after weekly visits to Randwick Children’s Hospital and the paediatric team at Wyong hospital who specialise in wounds and burns. to monthly clinic reviews. at 3 months old Victoria’s blood test results sadly returned a result of junctional Epidermolysis Bullosa a very rare condition that causes the skin to be extremely fragile causing painful itchy blisters.

EB is hereditary, unfortunately for Justin and we had never heard of EB or know anyone in the family to have this.

It is lifelong and life limiting disease not only affects the skin, but also the lining of the mouth and the digestive tract and respiratory tract. making it hard to eat and swallow and causing problems with her airway. Victoria is currently 7 months old with all her limbs bandaged for how long this will be we don’t know, Victoria has some development delays, not being able to sit up on her own, roll, crawl, feed herself, and have that fine hand motor skill due to bandages.

Other complications Victoria may experience with Junctional Epidermolysis Bullosa is abnormalities with loss of her fingernails and toenails that don’t grow back, joint deformities, hair loss, and dental problems. So far Victoria has lost 8 of her 20 nails.

The cause of JEB is the genetic code. COL17A.

There is no current cure for Epidermolysis Bullosa. The aim is to reduce new blisters developing, promote skin healing and prevent infections. by pain managing and wound care managing to give Victoria the best quality of life she can get.

The treatment is limited, and challenging, wound care and pain management is essential. Every time a blister appears, it needs to be popped with a surgical needle and a dressing applied immediately to prevent infection. Including blood blisters.

The following months have been an absolute whirlwind of stress, hospital appointments in Sydney, tests, observations, preparing lots of dressing packs, cutting the seams out of nappies all while learning life as a new mum. but due to her complex condition I am unable to place Victoria in childcare or return to work fully.

 Victoria is one of the most beautiful souls and has been super brave at every turn. I know there will be so many questions, but unfortunately now I don’t have all the answers. I am learning information as we journey down this path.

We have a massive road ahead of us and we need as much support as possible. Our days have become full of tears, loneliness, fear of the unknown, sleepless nights and our heads are swimming with information that is just not sinking in right now.

Please keep Victoria in your thoughts and prayers.