By Aliza Boyle, Max's mother.
Epidermolysis Bullosa is often referred to as the worst condition you have ever heard of. Certainly for my husband Matt and me, we had no knowledge of EB or the charity DebRA until the arrival of our first child – Max William Boyle who was born on the 24th July 2006.
When Max was born he had an open sore on his head. We were told this was due to a traumatic labour. Initially, we accepted what we were told and, other than that, our little boy was perfect – a beautiful, strong and healthy 8lbs 12oz.
Within a day of Max’s birth his skin started to blister, which led to open sores on his right elbow and groin area and his nails looked very sore. Swabs were taken from Max’s wounds and the hospital assured us it was nothing more than a skin infection. Max was admitted to the special care baby unit and given a strong course of antibiotics through an IV lead in his hand twice a day. The IV lead was held in place with sticky tape along his arm. Angry blisters started to appear after a few hours and 24 hours later the sticky tape was removed along with his umbilical clamp so that it would reduce the risk of friction against his nappy. It was then we knew this was more than a skin infection. We were told that Max could have a skin condition which would affect him throughout his life.
48 hours after Max’s birth we were told that a skin specialist from Great Ormond Street Hospital was coming to see Max – the hospital had contacted the DebRA funded EB unit at Great Ormond Street. It was on that day one of the most important people in Max’s life was introduced to us – Jackie Denyer, Senior EB Nurse Consultant. I remember Jackie looking at Max’s skin and within two minutes we were told Max had EB. We had so many questions, such as what does this mean? We were told the best case scenario was Max would have blistering on his hands and feet and in the worse case we would lose our son. Our world was shattered in an instant.
It was important that Max’s skin was cared for in the correct way. Jackie embarked on what would become the first of many lessons about the intensive and intricate techniques of blister treatment and dressing changes – and so began our war with an enemy we would never be able to defeat. I remember sitting in the hospital room with a pen and paper, tears streaming down my face trying to write down everything I was being told on how to care for our son. We left hospital with two bin liners of dressings, needles and creams – this would become part of Max’s daily routine. Gone were my fears of how I would manage being a first time Mum; instead I was faced with providing the best medical care for our son.
The first morning with Max at home was overwhelming and we were faced with a dozen new blisters. Whilst we were very scared, we never felt alone. Jackie would come to our home at least once a week and when she wasn’t with us the DebRA nursing team were always available by phone, day or night, for support and guidance.
It wasn’t until three weeks after Max’s birth that the biopsy results revealed our beautiful boy had the rarest form of EB and we were told it was unlikely he would live to see his first birthday.
Max died on the 1st March 2007 at home with Matt and I after an amazing fight against EB – his fight and determination to beat this cruel condition was incredible. Max was just seven months old.
I look back at our time with Max and I am sometimes amazed at how we coped. At three weeks old Max was put onto morphine to manage the pain of EB and as the weeks passed the medications increased. The internal effects of EB on Max’s body was extremely cruel. We slowly watched him waste away as he was unable to absorb the goodness from his feeds and the constant open wounds meant he needed to take in more calories than a normal baby of his age. This was impossible due to the effects EB had on his internal organs. When Max died he weighed little more than 4lbs.
I will never forget what our beautiful little boy had to endure. I cannot begin to imagine his life without the access to the EB nurse specialists.
It is difficult to articulate the reality of EB without sounding sensational. With each new day we watched helplessly as blisters invaded our son’s body. The result was angry and painful open sores. Nappy changing was a 90 minute ordeal.
We cannot begin to explain the pain we feel over losing Max. But everyday we remember the children’s nursing service and DebRA. Without the highly specialist medical care and support, Max would have had no quality of life.
Because of DebRA Max received the best medical care in the world. As a parent who has lost a child knowing this is priceless.
We will forever be indebted to DebRA.
