A West Midlands couple has shared the remarkable story of their daughter Freya, who stopped breathing just three days after birth following a severe brain bleed. Doctors told her parents she would not survive, but Freya defied the odds and is now nearly two years old.
Emergency at Home
Sophie and Jack, from the West Midlands, experienced every parent's worst nightmare when their newborn daughter Freya suffered a cardiac arrest at home. Sophie recalled the panic: "We called 999 and the emergency services instructed Jack how to do CPR while we were waiting for the ambulance." Freya was rushed to hospital and placed on life support.
Diagnosis and Prognosis
Freya was diagnosed with a rare congenital condition called developmental venous anomaly and nonketotic hyperglycaemia (NKH), a life-limiting condition. More than half of babies born with NKH die within the first week, and few survive past their fifth birthday. Despite the grim prognosis, Freya continues to fight.
Life with NKH
Now nearly two years old, Freya experiences daily seizures but receives vital support from Acorns Children's Hospice in the West Midlands. Sophie, who works as a neurosurgery nurse, said the hospice provides crucial respite care. "When coming to Acorns, it's like a big weight lifted off your shoulders," she explained. "It's given me the opportunity to see what life is like as just a mum, rather than just as a medical mum."
Acorns Spring Appeal
The family's story is being shared as part of Acorns' Spring Appeal to highlight the charity's work supporting families facing similar challenges. The hospice offers care and support for children with life-limiting conditions and their families across the West Midlands.
For more details, read the full story: 'Our newborn stopped breathing - we were told she would die while people sent congratulations'.
