Don’t write off Charlie. Pioneering treatment saved my baby girl
THE plight of Charlie Gard and his parents is a stark reminder of the day in April 1982 when my four-month-old daughter Lorna was diagnosed with an AV canal heart condition. The paediatric heart consultant Dr Joseph told me she was having extreme problems breathing, with imminent respiratory failure, was running a high temperature and would not last much longer. All of the previous 100 or so babies who had been treated for this condition had died by the age of six months. However, he told me about an untested procedure by a visiting American heart specialist, Dr Devlin from a Boston hospital, who was attending a medical conference in London. This procedure had only been devised as a theory on paper, but if I wanted, it could be attempted on my daughter. Without any hesitation, I signed papers accepting all the risks, and carried my baby girl down to the operating theatre. As I handed her over, I managed to tell her to please be very strong. Eight hours later, the surgeon came to see my wife and me. He told us they had successfully rebuilt my baby’s heart chamber and repaired the damaged valve. But the real test was the next 24 hours. Our baby girl was in intensive care with more wires and tubes connected to her than I would have believed possible. The sight of her small body lying there, with nurses checking monitors and taking samples, broke my heart. She became the first survivor of a fullblown AV canal heart defect thanks to that experimental procedure. Today, Lorna is 35 years old and a lovely married woman. This procedure is now widely used and there is a 70 per cent survival rate of babies born with severe AV canal defects, compared with zero up to 1982. I’m not qualified to comment on the rights or wrongs of taking Charlie to America. But I know this should be his parents’ decision and no one should deny them this last chance.
LEE JOHNSON, Dagenham, Essex.