Rustington parents are working to set up a charity in their daughter’s name after she died from a condition that is difficult to diagnose.
Tom, 25, and Lou Moss-Silverson, 28, of Sea Lane, want to raise awareness of necrotising enterocolitis (NEC), where the intestine becomes inflamed and begins to die. They want to help fund research into the serious condition and support other parents affected.
Twins Eva and Una were born three months early at Worthing Hospital on February 8, 2017, and transferred to the Trevor Mann Baby Unit at Royal Sussex County Hospital in Brighton the same day.
Lou was discharged a day later and the couple were able to move into free accommodation at Ronald McDonald House in Brighton immediately.
Tom said: “They were doing really well and when they were a month old, they were moved back to Worthing Hospital, to the special care baby unit.
“But two days later, on March 10, Eva contracted NEC and had to be taken back to Brighton. We had Una in Worthing and Eva in Brighton. We were given the same apartment in Ronald McDonald House and were going backwards and forwards between the two.
“Unfortunately, Eva passed away on March 19, after two operations.
“Una was in hospital in Worthing until April 24 and then we got to bring her home. What we have been trying to do since is to look at prematurity, as to why it happens, as well as research into the statistics. We know it is more common with multiple births.”
The couple attended the fifth international conference on NEC, held at Chelsea Football Club in London in October, and are going through the process of setting up Eva Rose Trust, having already raised more than £2,500. They are looking into what is needed and reflecting on what would have supported them more during their 11 weeks in hospital and the months afterwards as they came to terms with what had happened.
Tom said: “We are in communication with the special interest group NEC UK. We don’t know exactly where we are going with it but we want to try to contact more families.
“NEC is much more common in premature babies. Of the babies who get this cruel condition, around 50 per cent will lose their lives before or after surgery.
“Despite the technology we have today, there is still so much to learn about NEC and what truly causes it and, more importantly, what can prevent it and save lives.
“Nothing will ever make it ok, our family will always have something missing but we will always remember our strong, brave baby girl and everything she was and achieved in her short 5½ weeks in the world.”
Lou said research is currently being done into ways NEC is contracted but it is in the early stages and there are many complications.
She added: “It is because the gut is immature, it has not got the capacity to deal with bacteria. There is thought to be a window where there is greater risk and Eva was just at the end of that window. They are not sure why Eva got it, it is such a minefield because there are a lot of contributory factors.
“We want to look at how to reduce the risk and what we can do now, getting people to know the signs so they can recognise it straightaway.”
Tom, a freelance stage technician, and Lou, a teacher on maternity leave, are grateful for the support they received from Ronald McDonald House.
They returned last Saturday for a first birthday party with three other families they met while staying there, Wendy English and Elliot Farmer with baby Freddie from Peacehaven, Martin and Vikki Walby with baby Alexander from Surrey, and Michael and Louise Gibbon with baby Alistair from Kent.
Tom said: “Through a difficult time, we had that support. We had that one night when we weren’t with them, so to have that accommodation meant we had a space we could go back to easily. It was invaluable.”
Although they have been through a difficult time with Eva, Tom and Lou feel lucky that Una is doing so well.
Lou said: “Una is incredible, she keeps us going. She came home just before she was full term. She is now enjoying food a lot and is just the brightest little thing. She is catching up with her age.”
Ronald McDonald House Charities is an independent charity that provides free ‘home away from home’ accommodation at hospitals across the UK. The 14 Ronald McDonald Houses at children’s specialist hospitals across the UK, and in 2017 provided accommodation to over 8,000 families. The Charity relies on the generosity of supporters and fundraisers, without whom it would be unable to continue its work. For more information, visit www.rmhc.org.uk