'We saw her suffer yet smile' - Mum who lost 12-week-old baby campaigns for routine heart testing
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The mother of a baby who died of a heart condition at 12 weeks old is calling for a special test to be carried out on all newborns.
Emma Hart, from Watton at Stone in Hertfordshire, said she had 12 precious weeks with her daughter Daisy - time which she only had because her daughter was given the vital test.
Pulse oximetry tests check for oxygen levels in the blood. They can detect potentially life-threatening heart conditions quickly, but is only available in 80% of hospitals - and only 40% in the East of England.
At the Lister Hospital in Stevenage, where Daisy was born, they did administer the test and detect the defects, which meant that Daisy had a chance to try surgery.
Her mother said: "Because of that test, they were able to establish that there were problems with her heart quickly.
"We then just entered this whirlwind of getting to Great Ormond Street Hospital and finding out she had very severe, complex heard congenital diseases all mixed together.
"She had a very complicated heart. If we'd miss that test, she would have come home, and chances are, considering how poorly she was, she'd have been with us two days, if that, and probably died."
At just six weeks old, Daisy had heart surgery, but her condition was too complex.
The family chose to bring Daisy home, where she was able to spend time with her big sister Poppy before she died.
Children's heart charity Tiny Tickers said that more than 1,000 newborns leave hospitals in the UK every year with no one realising they have a potentially life-threatening heart condition.
A recent paper published in the Lancet found that babies are dying "unnecessarily" as a result of being discharged home with undetected heart conditions.
Jon Arnold, chief executive of the charity, said: "All that happens is once the baby is born, a few hours old, a little probe is strapped around the baby's finger and foot, and [it] shines a light inside a baby and that measures how much oxygen is in the baby's blood.
"We've funded and placed nearly 600 machines, which is something we're really proud of, and that's helped push up the percentage of hospitals that are offering this test to around about 80% of hospitals in England.
"But that still means 20% aren't and it's a bit of a postcode lottery of whether your baby gets offered this test or not."
For the testing to be done on all newborns as standard practice, it would need to be approved by the National Screening Committee (NSC), who have been considering introducing a routine test since 2012.
A Department of Health and Social Care (DHSC) spokeswoman said the NSC took the issue of pulse oximetry very seriously, and ran a consultation to establish the effects of screening all babies for low oxygen, the results of which were "inconclusive".
"The UK NSC supported the call for further research to be undertaken before it reviews this issue. This is ongoing, and the results are eagerly awaited."
But Mrs Hart believes the test could save lives, and is now campaigning for the it to be routinely completed at every hospital in the country.
She said: "There was something very special about Daisy. She was very determined to live.
"We watched her suffer yet smile.
"Something I always felt strongly about was using my grief to turn into a positive for her and I knew she'd made such a legacy, that this test should be offered to every child no matter what. So I'll keep trying to campaign however I can."
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