Toddler who weighed the same as a loaf of bread when she was born in Norwich was potentially saved by pioneering trial

Emily Kearey weighed just 1lb 13oz when she was born. Photo: Kearey family (Image: Kearey family)

Her and her twin sister Sophie were delivered by Caesarean section 12 weeks premature after it was discovered they had developed twin-to-twin transfusion syndrome.

But while Sophie weighed 3lb 3oz, Emily weighed just 1lb 13oz and was suffering with respiratory distress syndrome (RDS), a life-threatening condition that affects many premature babies due to immature lungs and a lack of surfactant - a naturally-occurring substance which coats the tiny lung sacs and prevents the lungs collapsing at the end of each breath.

Emily became one of three babies born at the Norfolk and Norwich University hospital (NNUH) who took part in a clinical trial, which was the first time a new synthetic lung medicine had been used in human babies.

And since, a breakthrough new drug treatment has been developed to help premature babies with breathing problems.

Twins Sophie and Emily Kearey were born premature, but after taking part in a new drug trial they have both fully recovered. Left to right, Emily, Rachel, William, Roger and Sophie Kearey. Picture: GREGG BROWN

Premature babies with RDS often need to be given extra surfactant down a breathing tube but the surfactant currently used in most neonatal units is sourced from the lungs of pigs.

At the time of Emily's birth, the neonatal intensive care unit (NICU) at NNUH was part of an international clinical trial investigating the newly-developed synthetic surfactant CH5633.

While this new surfactant had already been extensively studied in animals, this study was the first time it had ever been tested in humans.

Emily's parents were given the opportunity to let her join the study and agreed to participate.

Twins Sophie (left) and Emily Kearey were born premature, but after taking part in a new drug trial they have both fully recovered. Picture: GREGG BROWN

And at just six hours old she received the new surfactant treatment directly into her lungs.

This eased her breathing difficulties and along her and Emily then spent a further two weeks on the NICU at NNUH before being transferred back to their local hospital in Colchester, Essex, before being allowed to head home.

Emily's father, Dr Roger Kearey, who works as an out-of-hours GP, in Colchester said: 'Working in healthcare we knew a little bit about clinical research and were happy for Emily to go into the study, but it was still a daunting decision to make.

'We had complete trust in the doctors and were confident that we had been provided with all the information necessary to make our decision.'

Twins Sophie (left) and Emily Kearey were born premature, but after taking part in a new drug trial they have both fully recovered. Picture: GREGG BROWN

NNUH was one of only 12 centres across Europe that recruited babies to this landmark trial.

A total of 40 babies were recruited to the study and Emily was the last baby to participate.

Two years after taking part she is now a lively toddler.

Dr Kearey added: 'It was important for us to take part in this study, for Emily first and foremost.

'But also because we knew that this could help premature babies with similar difficulties in the future.'

The trial was led by Dr David Sweet, chief investigator for the study and consultant neonatologist at the Royal Maternity Hospital in Belfast.

Dr Sweet said: 'This important study has shown that the new synthetic surfactant CH5633 appears safe for use in premature babies and looks to be a promising new treatment when they have breathing difficulties.

'Our study paved the way for a much larger study now underway which is continuing to evaluate the effectiveness of CH5633.

'If this larger study confirms it to be an effective treatment, we hope it will eventually be made widely available to treat future premature babies born with breathing difficulties.'

Dr Paul Clarke, consultant neonatologist and principal investigator for the study at NNUH said: 'Taking part in trials of this nature enhances our international reputation as a leading centre for helping in the development of innovative treatments for sick and premature babies.

'We are most grateful to Emily and her parents for allowing her to participate, and also thank the other families whose babies joined the study.'

Mr Peter Chapman, NNUH medical director added: 'Our research teams across the hospital work hard to ensure we are at the forefront of advancements in treatments for patients.

'This first in human study on our neonatal unit is a fantastic example of this and helps to cement our position as a leading hospital for participation in research.'