Beating the odds – Evelyn’s story
Giving birth to a premature baby is a challenging enough time for most parents but for one Telford family, it proved to be the first of many complications that took them on an emotional journey testing the resilience of one little girl to the limit.
Evelyn Conway-Lee was born prematurely at 35 weeks to mother Sian and father Domonic. A few days after being discharged from their local maternity unit, Sian noticed an irregularity in Evelyn’s breathing which was a cause for concern. They returned to their local hospital’s postnatal unit for an assessment under the assumption that Evelyn might be suffering from bronchiolitis but as her condition deteriorated rapidly she needed to be transferred immediately via KIDS/NTS (Kids Intensive Care and Decision Support & Neonatal Transfer Service) to Birmingham Children’s Hospital.
On arrival at BCH, further tests were carried out and revealed that her liver and heart were failing and she had to be ICU ventilated to assist her breathing. Heart scans showed a fissure on her heart and blood tests confirmed she was fighting Enteroviral Myocarditis, a rare but severe disease causing inflammation on her heart and liver and preventing her blood from clotting.
Domonic remembers how they felt that first night at BCH. He said: “It was without doubt the most terrifying thing I have ever had to experience. Evelyn bled through the night with two nurses fighting to keep her alive with constant blood transfusions in an attempt to stop the bleeding. In the early hours of the morning, they managed to get ahead of it and stem the bleeding.”
Evelyn was only 13 days old, and the prognosis was not good. At this stage, she was only given a 50/50 chance of survival. She was put on an ECMO (Extracorporeal membrane oxygenation) machine in our PICU (Paediatric Intensive Care Unit) where she would remain for almost two months.
The ECMO machine effectively takes over the work of the heart, providing time for the heart to rest and recover while maintaining the blood supply to the brain and other organs in the body. It comes with many risks and is a highly specialised piece of equipment only available at a handful of hospitals in the UK.
This was obviously an extremely worrying time for the family who were able to stay in our emergency accommodation at Ronald McDonald House next door to the Children’s Hospital so they could remain by Evelyn’s side throughout her treatment.
During her time in PICU, Evelyn proved herself to be a real fighter as she managed to overcome her infection in the weeks that followed eventually allowing her to be taken off the life support after 8 weeks. She would go on to spend a further three weeks on Ward 11 before being discharged home.
Since her time in hospital, Evelyn received ongoing treatment and medication but after almost two years since her time on life support, she now only requires six-monthly checks with Cardiology to monitor her progress as she continues to recover well from her ordeal.
Sian wanted to give special mention to Dr Phil Botha, who was the main surgeon along with his skilled team for their expertise in diagnosing and treating Evelyn. To Sue Burlton, Senior ECMO Nurse who was with Evelyn for her entire shift on the first night spent in intensive care and to Hayley, who wrote a touching poem for the family in their leaving card when Evelyn was discharged.
Evelyn’s family would also like to pass on their thanks to the teams at the Children’s Hospital. Sian said: “The care she received is world-leading, the nurses, doctors, consultants, surgeons and housekeeping staff were so caring to Evelyn’s needs and to ours, always making sure we were OK. We are indebted to them for saving our little lady’s life.”