“Any warning signs looked much like any signs a premature baby might show when feeding. In many cases, by the time you know it’s there it can be too late to save the baby. NEC attacks the guts viciously and with extreme speed" explains mum Jenny.
"Elijah went from being well and stable, being held by us, to his abdomen being entirely distended and turning a deep purple in colour within hours. An oscillating ventilator was necessary to shake the air into his tiny restricted lungs."
Elijah survived to face surgery just four weeks after his birth, with the surgical team operating on him in his room because he was too sick to be transported to the children’s hospital round the corner. They removed 82cm of his intestines which NEC had destroyed. He was left with just over 20cm of small intestine, and a condition called short bowel syndrome.
This condition affects a child’s ability to absorb vital nutrients and, sadly, can lead to lead to severe, disabling and life-threatening complications.
The following week, a routine head scan showed that Elijah’s brain had become seriously damaged. In the days prior to surgery, while fighting to keep him alive, his brain had been starved of oxygen.
With minimal intestines and extensive brain damage it would no longer have been fair to continue the persistent, invasive, intensive care. Jenny and James had to make the heartbreaking decision to move from intensive care to palliative care.
“Elijah’s brothers were able to come in and hold him for the first and last time, and say goodbye. We have to be thankful that he died in our arms,” Jenny says quietly.
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The idea of being able to make things better for someone else in the future is a comfort to Elijah's parents, Jenny and James, who have raised nearly £28,000 for Action.
"I just think there is masses of potential for lives to be changed, given the right funding and the right quality of research,” Jenny says. “If research like this could prevent one small baby having NEC, then it is worth it.”