Charlie’s story – Grieving couple’s mission to end necrotising enterocolitis
Through their grief one young couple has joined Hudson Institute researchers in a bold effort to find out more about the disease that killed their first child, and to end necrotising enterocolitis (NEC).
Charlie Streeter only lived for eight weeks, but the impact of his short life promises to touch the lives of premature infants everywhere.
He was born at 26 weeks and, like many very preterm babies, that left him susceptible to a range of health challenges.
NEC is a common cause of death in preterm babies
In Charlie’s case it was necrotising enterocolitis (NEC), a disease of the gut and one of the most common causes of death in the one-in-10 Australian babies born prematurely.
NEC is a major health challenge because of its insidious onset and rapid progression. For babies who survive, NEC can also cause long-term complications for the developing brain.
No drugs available to prevent or treat NEC
Little Charlie started life at 680g and grew to 1.5kg, but in the space of a few days he went from growing and building up strength to being dangerously ill and needing two bouts of emergency surgery.
His parents, Sophie and Nathan, watched their first-born child deteriorate before their eyes, only to be told by doctors that there is no effective drug available to prevent or treat necrotising enterocolitis.
“The doctors were amazing,” says Sophie. “But the prognosis provided little hope.”
“Here was this disease we’d never heard of, that came out of nowhere, and there wasn’t a lot that anyone could do about it.”
When Charlie passed away in his mother’s arms, amid their shock and grief, Nathan and Sophie were determined to create something positive from the tragedy.
“Resilience is accepting your new reality, even if it’s less good than the one you had before. You can fight it, you can do nothing but scream about what you’ve lost, or you can accept that and try and put together something that is good.” – Elizabeth Edwards
Months have passed since they lost their little boy, and this couple’s resolve has grown, to improve the situation for the next family that faces necrotising enterocolitis.
Determination to end necrotising enterocolitis
“How have we not cured NEC yet?” says Nathan.
“We feel a need to do whatever we can, so that in 20, 30 or 50 years from now, NEC will be a thing of the past.”
“Even if it’s just providing better information and support, we want to make sure Charlie’s life could make a difference.”
Thankfully, there is a team from Hudson Institute of Medical Research, Monash University and Monash Children’s Hospital also working hard to make a difference for premature babies. Led by Professor Marcel Nold and Professor Claudia Nold, their research aims to control the deadly inflammation that characterises necrotising enterocolitis.
Sophie says that’s why they reached out to Hudson Institute of Medical Research – one of very few organisations actively searching for ways to prevent, treat and end NEC.
“We wanted to create something positive for other people going through this and hopefully contribute to finding a cure.”
The story of baby Charlie and the researchers aiming to improve the prospects of babies with necrotising enterocolitis.
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