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Joanne Ferguson raised £70 from 3 supporters
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Weʼve raised £70 to fund a film about a feared disease.
- Belfast, United Kingdom
- Funded on Thursday, 15th March 2018
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This photograph of my son, Guy, was taken when he was a day old. It was my birthday, and, after years of trying to have a baby, I had never wanted anything more than my twin boys. But a week later he died of necrotizing enterocolitis (or NEC), a disease which professionals who care for premature babies dread, yet few members of the public have heard of.
NEC causes more deaths in premature babies than any other disease of the digestive system. It can strike quickly, and babies who survive surgery to remove the tissue it destroys often have major long-term problems. These include cerebral palsy and short bowel syndrome, which means their development is restricted because they don’t have enough bowel left to absorb all the goodness in their food. In the worst cases, survivors need to be fed directly into a vein for months after leaving hospital, they can undergo multiple surgeries and need liver transplants.
Trying to take all this in when you’ve just been told your tiny baby needs life-saving surgery is unbearably difficult, which is why I want to help other parents who find themselves in the same terrible position. I have worked with Dr Minesh Khashu, who founded the Special Interest Group in Necrotizing Enterocolitis in 2012, to produce a website for the group, which contains lots of information on NEC for families. But we know we need more visual information, and we want to make an animated film that helps parents to understand this lethal condition for which there is currently no single test or known cure. To do, this we need lots of help.
Before surgeons can operate on a baby, parents need to give their written consent and I’ll never forget what that process was like for me. Guy had already been moved 70 miles to a neonatal intensive care unit - preparing such fragile babies for transport by a specialist team can be a major operation in itself - and I was expected to make an informed decision about the last resort treatment for a disease I had never heard of.
In the end, the only decision that was left to me was to tell a doctor when to withdraw Guy’s life-support. My precious son was in such a terrible state that we all knew he wasn't able to undergo an operation.
About 15 million babies are born preterm every year, and as more babies born extremely prematurely survive, more babies are at risk of developing NEC. Studies in Europe, North America, Australia and New Zealand have determined that the disease affects up to 13% of babies born at or before 33 weeks gestation.
In the UK, national data on NEC has been gathered and published in only two recent studies. The first looked at cases in England between 1/01/12 and 31/12/13 where NEC was confirmed by surgery and/or death and found 531 babies, of whom 247 (46.5%) died - 139 of them after surgery.
A study of babies in the UK and Ireland, which took place between 1/03/13 and 28/02/14, found 236 babies underwent surgery for NEC and 43 of them (18%) died. This did not include babies who were thought to be too sick to transfer or to operate on, and represented an incidence of surgically managed NEC of 27.9 babies out of 100,000 live births.
The report of that study says, “It is also exceptionally difficult to accurately counsel parents of infants with NEC”.
That is precisely why Dr Khashu and I have already produced detailed information on NEC for families, and why we are eager to provide them with the option of a film at such a critical time.
With an animated film, we can show inside a baby’s intestines and inside an operating theatre. We can show how parents care for their babies’ stomas after surgery, and we can do this without getting any cameras in the way of professionals working to save a gravely ill baby. We don’t have to invade anybody’s privacy – least of all a baby’s – or risk upsetting scared parents with real footage.
An animated film can also be adapted and translated into other languages relatively easily and cheaply. We want to help parents wherever they are in the world.
Dr Khashu has led the neonatal service at Poole Hospital for the last 10 years and their team were joint winners of the ‘outstanding team’ category at this year’s Zenith Global Healthcare Professionals Awards, which was made in recognition of their impressive performance and feedback from families. Dr Khashu has discussed the film project with ForMED films, who have developed excellent resources for parents and patients and he would lead the project. Since developing films of this high quality is very detailed and time-consuming, it has been estimated that it would cost about £50,000.
All the money raised from this appeal will go towards the cost of the film and any additional funds will be used to improve the SIGNEC website for professionals and families.
SIGNEC is not a registered charity, but its five international meetings have brought together professionals and parents from around the world who are determined to see significant progress made in the understanding and prevention of this exceptionally complex disease. If you would like more information on its aims and activities please visit the website .
Thank you very much for any donation you are able to make.
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Leave a message of support
Nov 25, 2017
In memory of Guy too beautiful for this world, and in support of an inspirational lady - his mother Joanne x
Nov 17, 2017
Nov 16, 2017
In ever-loving memory of Guy.
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About the fundraiser
Belfast, United Kingdom
Mum of two boys who has worked with health professionals to improve and support neonatal care. Former NHS regional and national lay representative, parent adviser to Special Interest Group in Necrotizing Enterocolitis (SIGNEC), and international adviser to The NEC Society.