By Gillian Pigott, Findlay's mother.
Our first child, Findlay, was born on April 2nd 2003. Except for a few missing fingernails and an open sore on his left forearm, our little boy was perfect.
Within hours of Findlay’s birth, the Consultant Dermatologist was in my hospital room. After examining Findlay, she immediately contacted the DebRA-funded EB Nursing Service at Great Ormond Street Hospital for Children (GOSH). Twentyfour hours later, DebRA’s Senior Children’s EB Nurse Specialist, Jackie Denyer, was with us.
While Ian (my husband) and I had blood taken for DNA testing, Jackie took blood and a skin biopsy from Findlay. Jackie agreed that Findlay’s symptoms were synonymous with EB. She described how, in every case of EB, there is constant, spontaneous blistering and shearing of the skin from even the gentlest friction. Jackie also explained the three main types of EB - Simplex, Dystrophic and Junctional - and how the severity varies considerably within each type. Seven days later, preliminary genetic results confirmed our worst fear: Findlay had recessively inherited Herlitz Junctional EB and it was unlikely that he would live to celebrate his first birthday.
With each new day, we watched – helplessly – as blisters invaded our little boy’s body. The blisters were relentless and unforgiving. All we could do for Findlay was learn the intensive and intricate techniques of blister treatment and dressing changes. After ten days in hospital, we came home. We were so scared but we never felt alone. Jackie and her team came to see us as often as we needed. When they were not with us, they were available by phone, day or night, for support and guidance. Findlay benefited enormously from this incredible team effort.
As the blisters multiplied more and more quickly, Findlay started to feel pain. Managing Findlay’s pain was as important as caring for his blisters. With the unfailing support of the EB team, we constantly tweaked Findlay’s medications to keep him comfortable. Eventually, no part of Findlay’s body was blister-free. The result was angry and painful open sores. Nothing we did stopped the rubbing between Findlay’s skin and his nappy or babygrow. Skin beneath old blisters never healed properly because it wasn’t capable of doing so. And areas that had already blistered often blistered again.
Our routine for nappy changing was always the same. I would feed Findlay or preoccupy him while Ian performed the horrendous task of removing old dressings, lancing blisters and applying new dressings. There were days when changing Findlay’s dressing would take three hours, and there were days when our dear little boy had to orally intake eight different medications to keep him pain-free.
Two weeks before Findlay passed away, the blisters were strangely few and far between. This was the calm before the storm. Suddenly, one night, his pain skyrocketed again. The blisters were now concentrating their efforts on Findlay’s insides, attacking him internally.
On 22nd June 2003, Findlay died peacefully, at home and in our arms. He was three months old.
The pain we feel over what Findlay had to endure is unshakeable. But every day we remember the Children’s EB Nursing Service. Without their highly specialized medical care, Findlay would have had no quality of life. The charity DebRA is an integral part of the Children’s EB Nursing Service. EB nurse specialists exist because of it. We will forever hold DebRA close to our hearts. Knowing that people living with EB and those yet to be born have access to the same care and support that Findlay received keeps us buoyant in a world that will never be the same.
