by 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 transferred to St. George’s by my local hospital to see a specialist and it happened again. I went back for a week every day and then every other day for a week, but they never saw it again.
I had another scan scan near Lily’s due date and at that time there was no blood flow between the placenta and the baby. I had to have an emergency Caesarean section. That was after 35 weeks. She was so tiny, 3lb 8oz, but they couldn’t find anything wrong with her.
After four or five weeks I was allowed to bring her home. She didn’t accept. One day when she was about seven weeks old, I was traveling with the children for the day, and when I took her out of the stroller, she had stopped breathing, she was gray and foamed her mouth. We took her to a hospital and she started to breathe again. She was released, but a friend of mine who is a pediatric nurse advised me to bring her to East Surrey Hospital, where she was born and she had all of her notes. We were there for 10 days while you carried out further tests.
The doctors thought she could have a metabolic disease and illuminated us blue to see the Royal Brompton to see a specialist. They agreed, but we were allowed to go home. We had to get a taxi back and Lily breathed again on the way. I had a nurse with me that performed CPR. A few nights later, Lily had two heart arrests in East Surrey and ended up in the Evelina Children’s Hospital about life support.
Lily had a lumbar spine and a few more tests. They strongly suspected that she had mitochondrial diseases. We were told: “I’m really sorry, there is no treatment, we can’t do anything, Lily will die.” We had a muscle biopsy to confirm the diagnosis, but they did not believe that the result would return before it died.
Lily didn’t die when they switched off life preservation. We took her home and she survived six months. I sat on my stomach in bed with her because I was so scared to wake up and not to be here. I couldn’t bear the thought that she was alone.
We had never heard of mitochondrial diseases. After Lily died, we asked for donations instead of flowers at her funeral, and there was nowhere to send her. There was no active charity that was dedicated to mitochondrial diseases. We thought it will never change if we do something. We just did it, we set up the Lily Foundation.
We knew that we had to diagnose it correctly to treat it or find a healing. So we collected money for a gene test program. That was an extremely successful project and now it is a routine test for mitochondria diseases.
The charity has now collected more than 11 million GBP and supports more than 1,300 families and patients throughout the UK. Our website is full of information and we carry out annual meet-ups for families, for adults and for young adults. We have closed Facebook groups that bring people together. People there also go for practical advice and support.
So that parents have the opportunity to have a baby free of these diseases, what they have done in Newcastle is not only an incredible piece of science, but also an amazing step forward for families. It is such a closely regulated, robust process from start to finish, and we should be very proud of that. It will always learn. It is a new technology and I hope it opens doors for more in the future. This is about giving families a choice if every other option has been excluded.
