Video report by ITV News On-Screen Journalist Nitya Rajan
Parents and doctors are calling for a 'life-saving' blood test for newborn babies to be made mandatory across the UK.
The test, known as Pulse oximetry, is currently only available in hospitals that choose to offer it as part of its routine screening procedures.
It is a simple, non-invasive test which measures oxygen in the blood to identify serious heart conditions and save newborns' lives, according to Andrew Ewer, Professor of Neonatal Medicine at the University of Birmingham.
Katie Hickens' son Rory was born with a serious heart defect and she told ITV News she dreads to think about what would have happened had the test not been offered.
"Potentially Rory wouldn't be here if it wasn't for the pulse oximetry testing," she said.
Around 40% of UK maternity units are using it but the UK's National Screening Committee has recommended it not be rolled out further.
Public Health England argue the procedure could lead to over-diagnosis, false positives, excessive treatment and unnecessary worry for new parents.
Baby Realle had the test when she a day old but her parents Justin and Georgina say the procedure was far from being a source of worry.
They told ITV News Central: "We wanted to know as much as possible, we said we thought she was going to be smaller than she was and we wanted to make sure everything's working."
Professor Ewer has been routinely screening babies with pulse oximetry since 2009.
He told ITV News Central: "We here stories from parents of babies who have been sent home without a diagnosis some of whom have become very ill and sadly some of whom have died and there's very strong evidence from the USA, where the test is not mandatory that deaths in newborn babies with serious heart defects has been reduced by a third since the test was introduced and we think that equivalent improvement in mortality could be achieved here."
What happens now?
The National Screening Committee has launched a public consultation, until August 9, on whether the evidence it has considered is sufficient.
Congenital heart disease is one of the most common types of birth defect, affecting up to eight in every 1,000 babies born in the UK.