A mother from Hertfordshire has said that a special heart defect trial gave her family more time with her baby before her death at 12 weeks. Emma Hart said that her daughter Daisy, who had multiple heart abnormalities, would have died within 48 hours if it wasn’t for a “pulse oximetry” test administered at Lister Hospital in Stevenage when she was born on 19 June. The test is not part of the routine screening programme in the UK but measures a baby’s oxygen levels and allowed Hart and her partner Ronnie to spend several weeks with Daisy, giving them time to “learn who she was and build that love.” Daisy died in Hart’s arms on 10 September.
Miss Hart, who now wants the test to be made available to every child at birth, has called for provision to be approved by the National Screening Committee (NSC). “That child deserves every chance of life – and this test isn’t invasive. It’s a five-minute test and it would literally save a lot of babies’ lives,” she said. Several heart abnormalities were discovered in Daisy and she had a “quarter of a heart working,” Miss Hart said. Daisy underwent heart surgery, but it was only a temporary fix and they couldn’t do a full fix because she was so little. At first, there was hope, but it was short-lived.
A Department of Health and Social Care (DHSC) spokeswoman said that the NSC took the issue of pulse oximetry very seriously. She added that the NSC 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,” she said. “This is ongoing, and the results are eagerly awaited.”
Miss Hart said that when Daisy was born, she had a “completely normal” pregnancy and there were no issues at birth. The pulse oximeter test was only provided as part of a trial. Miss Hart wants the test to be made available to every child at birth as a lasting legacy to her daughter. She believes that it’s crazy to think that hospitals wouldn’t just have that in place already. She hopes her story will inspire everyone to advocate for the test and help save so many babies’ lives
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