Mother backs drive for awareness
A mother has backed a drive to raise awareness of a charity that helps parents whose child hasith a debilitating illness.
Julie Greenway’s daughter Trianna, who was born prematurely, suffers from necrotising enterocolitis – often shortened to NEC.
The tot, who turns two in March, was born at New Cross Hospital at Wednesfield weighing a tiny 1lb 9oz – able to fit in the palm of her father’s hand.
Julie now wants to help raise the profile of NEC UK, a support group for families of children with the condition. Its organisers need to raise £5,000 for NEC UK to become a registered charity with the Charities Commission.
This would allow the online support group – which has more than 450 families signed up – to help even more people affected by the illness. Julie, aged 45, of Low Hill, Wolverhampton, said: “We’re trying to raise awareness because a lot of families don’t know about NEC.
“We want to help raise awareness but to be able to do that we need to get to £5,000. At the moment we’re still about £600 short and we need to get over that hurdle. I want people to have a better experience than I had – we want to be able to really help parents.”
NEC affects around 3,000 babies every year in the UK and about one in 20 admitted to a neonatal unit. Fifty per cent of babies requiring surgery sadly won’t survive.
After she was born Trianna was admitted to the neonatal intensive care unit at New Cross hospital. Gradually Trianna became stable requiring less medical intervention and was finally able to be moved to the special care nursery.
However when Trianna was five weeks old she unexpectedly began to vomit green bile. The following day she became rapidly unwell and needed to be placed back on life support in intensive care. X-rays found lots of bubbles in Trianna’s bowel that had caused her tummy to become swollen and sore. Trianna had developed NEC.
Trianna needed to be transferred to a specialist surgical neonatal intensive care unit and with no cots available at Birmingham Children’s Hospital Trianna was blue lighted to Manchester St Mary’s over 70 miles away.
Because Trianna was so unwell her parents weren’t able to travel in the ambulance with her which meant Julie couldn’t see her until the following day when she was able to get a lift to Manchester.
Trianna’s feeds were stopped to rest her bowel and she was given antibiotics and lots of other medications to support her.
Trianna slowly began to respond without needing surgical intervention as so many babies do. It was some time before Trianna was well enough to be transferred back to the West Midlands.
Trianna was one of the lucky babies to survive NEC and after almost 18 weeks Trianna was able to be discharged home on oxygen.
After being home for 12 weeks she unfortunately developed a serious respiratory infection and was admitted to Walsall Manor Hospital but needing intensive care again was transferred to the PICU at Birmingham Children’s Hospital where she remained for five weeks before being transferred back to Walsall.
Trianna came home again on oxygen two weeks after arriving back in Walsall. She is now progressing well.
A statement by NEC UK says: “We raise awareness of NEC and fundraise to support families and towards further research of this condition. We have parent information leaflets that are currently going out to all UK hospitals.
"We supply special adapted teddy bears to families (and neonatal units upon request) to help children and siblings identify with their journey.
"Our future goals are to offer practical support to families with financial support to those facing emergency situations and to launch a dedicated helpline while also partnering with medical professionals and other organisations in relation to NEC.”
For more details about NEC visit www.necuk.org.uk or to donate to the cause head to www.justgiving.com/nec-uk
NEC also has a Facebook page and Twitter handle is @NECUK_Charity
