‘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 condition

• Eight healthy babies born after IVF using DNA from three people

When 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.