The bereaved parents of a four-day-old girl have become the first at Bradford Royal Infirmary to agree to donate her heart valves to help save the lives of other sick babies – and are now urging others to do the same.
Nicky Hodges-Rhodes said despite being devastated when told their longed-for child Lillie Grace was not going to survive, she and her husband Matthew Rhodes managed to find “some light at a very dark time” when doctors asked for their help.
The couple, of Greengates, Bradford, invited their close family and friends to say their “hellos and goodbyes” before Lillie’s life support was stopped on November 8 last year.
After what had been an uncomplicated pregnancy Lillie’s brain was starved of oxygen when her mother's placenta suddenly failed when she was one-and-half weeks overdue.
Mrs Hodges-Rhodes, 35, said within six minutes of Lillie being delivered by emergency Caesarean she was being ventilated and a scan three days later showed no blood had been getting to her brain.
“We knew straight away there was nothing we could do but take the machine off,” Mrs Hodges-Rhodes said.
“There wasn’t really a decision to make, we said she would make her own mind up. The special care unit staff were brilliant with us, 21 people came to see her that night, two at a time to say their hellos and goodbyes in the same breath.
“The grandparents had their cuddles and we did all we could to try and make as many memories as we could.”
It was during that desperate time the couple talked about wanting to do something to help the unit and because they put that idea to their consultant neonatologist Dr Chris Day, he felt able to ask them to do something no-one else had ever done at the BRI before – to donate Lillie’s heart valves.
“We didn’t even discuss it,” said Mrs Hodges-Rhodes.
“We just looked at each other. It made us feel completely different. We felt that Lillie’s death was not going to be for nothing.”
Mrs Hodges-Rhodes said: “It’s such a sensitive time it’s difficult for doctors to ask parents, but because we told Dr Day we wanted to help, he felt able to ask us about her valves and we’re so glad he did.”
Lillie’s heart valves have been frozen and will go anywhere in the country where they are needed – potentially they will save two young lives – and when they are used her parents will be told.
Mechanical valves can be used to help children with serious heart problems but they need support from medication which brings its own complications.
Natural heart valves are healthier although they do not grow with a child and would need replacing.
Dr Day said: “Lillie’s mum and dad were incredibly brave. It was the first time this had happened in Bradford and it’s only been done once before in Leeds.
“It’s something that many baby doctors are anxious about because it’s such a difficult issue to raise with families when you are supporting them in the expected event of the death of their baby that it may be okay to extract some good from this turmoil.
“There is a shortage of heart valves. It was very clear with this couple, they knew straight away it was the right thing for them to do.”
A great knit will help other parents:
Knitting needles across Bradford are clicking away right now to help parents with special care babies.
Nicky Hodges-Rhodes hopes to register Lillie’s Grace as an official charity soon to support other parents whose babies need extra care when first born.
The idea started with raising funds to buy wool for Lillie’s grandma to keep knitting items for BRI’s special care baby unit but it grew.
Liz Hodges, 60, of Idle, had used knitting to give up smoking when she found out Lillie was on her way.
After Lillie’s death, the family did not want her to stop and it gave them an idea that triggered the thought of starting up Lillie’s Grace.
“There’s lots of elderly people out there who want to knit but can’t afford the wool so we started car boots and other events to send out knitting packs,” said Nicky. “People heard about us and started sending in blankets and hats, all sorts.
“We've got so many ideas to work on – one is to make up toiletry packs for mums and dads who suddenly find themselves in hospital as a result of an emergency and in special care with their babies.”
Nicky added: “Doing all this has helped us in so many ways.”
A Facebook page is being set up but anyone wanting to help or find out more can ring Nicky on (01274) 413092.