'Her toes dropped off one by one' - Parents of smallest ever baby born at hospital describe effects of life-threatening infection
PUBLISHED: 09:21 16 August 2018 | UPDATED: 15:56 16 August 2018
Norfolk and Norwich NHS Foundation Trust
A mother has described the horror of her 14oz baby daughter contracting a deadly blood infection at just two weeks old.
Lily-Rose Davies, now nine, was born at the Norfolk and Norwich University Hospital and is still the lightest baby to have been born there who has survived.
But while she was fighting against the odds due to how early she arrived the tiny tot was thrown yet another challenge when she contracted life-threatening sepsis when she was just two weeks old, which caused the toes on her right foot to “drop off one by one”.
Lily-Rose’s mother Louise, whose eldest daughter Matilda was also born small at 750g, said: “From the 20 week scan it was found she was not growing. I had regular scans and she kept going bless her.
“It was awful because we knew how hard it was the first time [with Matilda], I remember have a meeting with Dr Paul Clarke and he said babies under 500g, they just don’t survive, but you think we’ve just got this little person, you just want it to be okay.”
When Mrs Davies reached 26 weeks she was in hospital when Lily-Rose’s heart beat kept dropping.
“They did an emergency c-section,” she said. “And she came out in her amniotic sac and after that she was very up and down.”
Mrs Davies, 38, said the first few weeks of her daughter’s life were difficult.
She said: “They were dark days. She fought and [the staff] just work so hard. And she pulled through.”
But in what Lily-Rose’s father Dan described as a “nightmare” the youngster caught sepsis, a particular risk for premature babies because their immune systems are not fully developed.
Mr Davies, 45, said: “It was an awful experience to get that call from the neonatal intensive care unit (NICU) asking us to come back to the hospital urgently. No matter how well the call was worded, we arrived to see medical staff around her incubator.”
Mrs Davies said: “We sat at her bedside all night. We thought we might have to lose her right leg because that turned really blue but everyone kept saying it should be left a bit longer and the colour came back.”
But Lily-Rose, who also has a three-year-old brother Liam, was left with permanent brain damage and lost all the toes on her right foot, and now has to wear adapted shoes.
“They dropped off one by one,” Mrs Davies said. “That was quite hard but we were really lucky actually.
“We just laid in a dark room with her, hoping no one was going to come and say anything
“I don’t think, to be fair, none of the staff thought she was going to pull through and make it.”
But now a bubbly student at Stalham Academy, Lily-Rose is doing well and enjoys going to school at Stalham Academy.
“She needs a wheelchair for long journeys,” Mrs Davies said.
“But she’s able to walk to school and she loves swimming, she loves horse riding. If we go up to the hospital now they all still recognise her.”
But life is not always easy for the family, who live in Rivermead, Stalham, as Mrs Davies said getting hold of items suitable for Lily-Rose was a struggle.
“You don’t realise the cost of things. Her shoes, which are adapted to hold her splits to help her stability, come from a company in Italy and cost £140. If I won the lottery I’d set up a shop with affordable shoes and have Lily-Rose design them.”
The Davies’ have also thrown their support behind research which hopes to stop babies like Lily-Rose getting sepsis.
Along with parents of more than 100 babies treated at the hospital’s NICU and Medway Foundation Trust in Kent they opted to take part in the ARCTIC study, which is comparing the safety and effectiveness of two antiseptics for cleaning the skin of babies prior to central venous catheter insertion.
The use of central catheters is essential to help feed very premature babies they are able to take enough of their mother’s milk.
Mr Davies said: “Anything that can be done to learn from this experience such as this trial to reduce the risk will always have our 100pc backing.”
Consultant neonatologist Professor Clarke, who is leading the study but was also in charge of Lily-Rose’s care as a baby, said she was a “little miracle”.
He said: “It is truly wonderful that she managed to survive, although this is clouded by the significant and real ongoing difficulties Lily-Rose and her family have to face in their everyday lives by what the sepsis left in its wake.
“Lily-Rose highlights the vital importance of our research trial to try to stop future babies suffering similar dangerous infections.”