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Baby, just look at you now: Tiniest tot to ever be born at hospital beams at nine years old

PUBLISHED: 13:52 14 August 2018 | UPDATED: 16:10 14 August 2018

Lily-Rose weighed just 400g when she was born. Picture: Norfolk and Norwich NHS Foundation Trust

Lily-Rose weighed just 400g when she was born. Picture: Norfolk and Norwich NHS Foundation Trust

Norfolk and Norwich NHS Foundation Trust

She is the lightest baby to have ever survived at the Norfolk and Norwich Hospital.

Lily-Rose and Prof Paul Clarke earlier this year. Picture: Norfolk and Norwich NHS Foundation TrustLily-Rose and Prof Paul Clarke earlier this year. Picture: Norfolk and Norwich NHS Foundation Trust

And now, nine years later, just look at Lily-Rose Davies, from Stalham as she smiles alongside the consultant hoping to help others who have suffered like her.

When Lily-Rose was born she was 14 weeks early and weighed just 400g, or 14oz, less than a can of soup.

But when she was just two weeks old, and still tiny, she contracted life-threatening sepsis, which left her battling for her life.

Lily-Rose’s father, Dan, said it was a “nightmare” to see his tiny daughter become seriously ill so quickly.

Louise and Dan Davies (centre) with Prof Paul Clarke and neonatal research nurse Amy Nichols. Picture: Norfolk and Norwich NHS Foundation TrustLouise and Dan Davies (centre) with Prof Paul Clarke and neonatal research nurse Amy Nichols. Picture: Norfolk and Norwich NHS Foundation Trust

He 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.”

Although she pulled through, Lily-Rose was left with permanent brain damage and lost all the toes on her right foot.

Norfolk and Norwich consultant neonatologist Professor Paul Clarke said Lily-Rose 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.”

Now, the Davies family have 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 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.

However, the presence of bacteria on the skin can lead to dangerous bloodstream infections, such as sepsis, if the skin is not cleaned properly before the catheter is inserted.

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.”

While Prof Clarke, who is leading the study and has been working on it for six year, added: “Lily-Rose highlights the vital importance of our research trial to try to stop future babies suffering similar dangerous infections.”

He said there is currently no national best practice guidance to help NICUs across the country know which antiseptic should be used for premature babies.

Currently there are at least seven different antiseptics being used in UK NICUs, and all have different concentrations and constituents.

He hoped the trial results will indicate that it may possible to achieve better skin disinfection by using stronger antiseptic solutions to clean the skin before feeding catheters are placed, and that such antiseptics can be used safely in premature babies.

The ARCTIC feasibility trial results will be available in 2019 and it is hoped that it will pave the way for a larger multicentre trial to find out which is the best antiseptic to use.

He said: “We do a lot of research here to try to keep at the forefront of neonatal care. Everything we are doing with our research involving babies is trying to work out what is better for babies and what treatments may help them to survive as healthily as possible. We can only move forward if we do research. And we are really grateful to all the parents who generously allow their babies to participate in these important research studies.”

Currently there are ten clinical research studies under way at NNUH aiming to advance neonatal care.

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