Article by Alex Pope
BBC News, Hertfordshire
Published 3 hours ago
With a poignancy that is hard to forget, Emma described the extraordinary journey through which she gave birth to Daisy on 19 June 2023 in Lister Hospital, Stevenage. Daisy’s life was all too brief, tragically cut short by multiple heart defects that ultimately led to her passing at a tender age of 12 weeks. Yet, in a painful yet bittersweet narrative, Emma shared how a particular heart defect trial provided precious bonus time that allowed her to form an authentic bond with her daughter before her capacity to experience life slipped away.
Emma put forth the assertion that without the intervention of this specific heart defect trial, Daisy wouldn’t have survived even 48 hours after her birth. The trial involved the administration of a technique known as ‘pulse oximetry’ which was deemed suitable for Daisy’s condition, having been born with multiple heart irregularities. The procedure, while yet to be part of the UK’s routine screening programme, measures an infant’s oxygen levels and gave Emma and her family the opportunity to learn about, and love Daisy, in ways one can only do with the passage of time.
Daisy’s strength allowed her family to spend several beautiful weeks with her, sharing moments of love and tenderness. From Watton at Stone, Hertfordshire, Emma, a mother of resilience and strength shared, “It was a tumultuous period, replete with devastation and hardship. But if it weren’t for those three months that we were gifted with her, situations could have been significantly more heartbreaking. Having the privilege to genuinely get to know her, to be with her, to cultivate that intense love was such an invaluable experience.”
This does not neglect the harsh reality that had it not been for this procedure, Daisy wouldn’t have survived past 48 hours. Now, Miss Hart fervently petitions for this test to be made accessible for every newborn as a testament to her departed daughter.
She is urging the National Screening Committee (NSC) to approve the arrangement commenting, “Every infant deserves to fight for life, and this examination, which isn’t intrusive and takes but five minutes, could literally hold the key to survival for numerous babies. The fact that hospitals don’t have these facilities in place is astounding given its potential to save so many lives.”
When Daisy was born, she was the outcome of a perfectly regular pregnancy. Pulse oximetry was made available only as part of a trial. As soon as an alarm was raised in the test, Daisy was immediately transferred to Great Ormond Street Hospital in London. Unfortunately, multiple heart irregularities were discovered, and Daisy’s small heart was only functioning at one-fourth its full capacity. Despite heart surgery, it was a mere temporary solution, owing to her small size.
Daisy passed away peacefully in her mother’s arms on 10 September at the comfort of her home. As we tread this memory lane paved with sorrow and heartache, it is undeniable that further research and results, eagerly awaited, could potentially prevent such painful circumstances. Lower levels of oxygen in babies are an aspect that the NSC, and the Department of Health and Social Care (DHSC), take extremely seriously. Their consultation findings on the effect of screening all babies for reduced oxygen haven’t been conclusive.
