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‘We’d never heard of it’: a woman tells of daughter’s death from mitochondrial disease

Liz Curtis describes how the loss of Lily drove her to set up a foundation that funded a gene test for the conditionEight healthy babies born after IVF using DNA from three peopleWhen I had my 20-week scan, Lily had a strange heartbeat. It would beat and then stop and then start beating again. The sonographer had never seen it before. I was referred by my local hospital to St George’s to see a specialist and it happened again. I went back every day for a week, and then every other day for another week, but they never saw it again.I had another scan nearer Lily’s due date and that time there was no blood flow between the placenta and the baby. I had to have an emergency caesarean. That was at 35 weeks. She was so tiny, 3lb 8oz, but they couldn’t find anything wrong with her. Continue reading...

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