Written by Guy’s mother, Joanne Ferguson, contributor to the Special Interest Group (SIGNEC) in the United Kingdom

This picture of my son, Guy, is used to raise awareness of what is possibly the most complex condition that affects premature babies. Even though I find it painful to look at the photographs of my lost son in the privacy of my home, let alone in public, I accept the need to use them to urge action on necrotizing enterocolitis (NEC).

Infant mortality has decreased, the morbidity rates of extremely prematurely born babies have decreased, yet NEC has not significantly improved and we need to reduce the suffering it causes babies and the burden it places on families, professionals and healthcare systems. In the years since Guy died, I have worked with health and charity professionals and persistently lobbied politicians. I have been driven by the guilt I feel at having failed my son, but also because I do not believe premature babies are always treated as the equals of older children and adults, or that society grasps how much it affects parents when their babies need intensive neonatal care, especially for diseases as sudden and calamitous as NEC.

Guy was one of the babies who never underwent surgery. He was born at 30 weeks after a traumatic pregnancy and he was significantly smaller than his twin brother. When he was six days old their doctor said, “If someone had told me when he was born that this is where we’d be today, I’d have taken their hand off!” But that evening blood was detected in his stool and I was sent home to lie in bed awake until the telephone rang shortly after midnight. A junior doctor from another section met us at the hospital and told us Guy was gravely ill.

It took twelve hours from when NEC was first suspected for a neonatologist to attend to him, and when they did, they thought Guy could be used for junior doctors to practise inserting long lines. We waited hours for the transport team to arrive at a NICU 70 miles away, and I was horrified when I saw the damage to my precious son’s face. A glance into the consultant’s eyes told me he held out little hope, and by the time I sat opposite a surgeon we both knew it was too late to save the baby I had spent years, and thousands of pounds, trying to have.

I already understood how death can take a loved-one suddenly and horrifically because my father had died of burns. Feeling trapped in the cramped, bright and noisy neonatal unit with other silent, terrified parents, I knew that images, sounds, smells and words would be seared into my brain for months and years to come. I knew how often they would stop me from sleeping and smiling in the future. By the time I agreed to turn off Guy’s life-support, he looked like a medical experiment gone wrong. I could not possibly show the last photograph my husband took of our son, and only one other person has ever seen it: Dr. Minesh Khashu, founder of the Special Interest Group in Necrotizing Enterocolitis (SIGNEC).

I sought out Dr. Khashu because after Guy died I needed to know more about NEC and I struggled to understand, and accept, why there was so little information on this disease in the UK. Nobody seemed to think babies like Guy mattered enough even to count up their deaths, and when the results of the first population survey of severe NEC in England were presented at a SIGNEC meeting in 2014, I wanted to jump out of my seat and cheer. It has been too easy to dismiss the deaths of premature babies as bad luck.

There is more research and information on necrotizing enterocolitis now than when it took my longed-for son 11 years ago. There is also more international collaboration. But these efforts must accelerate because most parents today have higher expectations of care and will not meekly accept that having a baby ravaged by NEC is just their bad luck. If we reduce the incidence of this disease, we will also reduce its catastrophic consequences for families and the burden it places on professionals forced to treat a disease they dread. Those professionals, however, can escape NEC one day. As Guy died in my arms, I wanted to give my life to save him and he will be a part of every day of the rest of my life.