EMMA INNES dailymail.co.uk A mother says she gave birth to a perfectly healthy daughter despite doctors advising her to terminate her pregnancy because the baby was ‘brain damaged’. Liane Stooke, 38, says it was only her mother’s instinct that saved baby Miley, two. Mrs Stooke said: ‘We were told Miley was probably severely brain damaged and wouldn't be able to communicate with or recognise us. ‘It was a terrible decision to have to come to. We agonised over what we should do right up until the last minute.’ Mrs Stooke, and her husband Iain, 38, were delighted when they discovered they had conceived their third child. But their joy turned to despair when an MRI scan revealed a shadow on their unborn daughter's brain. Mrs Stooke said: ‘We were so happy that our two sons would have a little brother or sister. ‘It felt awful to see the doctors looking so worried. They immediately ordered another urgent scan.’ The repeat scan at Frenchay Hospital in Bristol apparently confirmed Mr and Mrs Stooke's worst fears - their daughter was diagnosed with a condition called holoprosencephaly, meaning she was probably severely brain damaged. Mrs Stooke said: 'It was a waking nightmare. We agonised every minute over what to do - and every time I felt her kick inside me, my heart broke' ‘The doctors said she might never walk, talk, or recognise our faces,’ said Mrs Stooke, a bank administrator. ‘It was also possible she'd be physically and facially deformed. There were a lot of unknowns.’ Although Mrs Stooke was, at 30 weeks pregnant, beyond the normal limit for abortion, doctors advised termination as an option because holoprosencephaly would prevent the child from enjoying a meaningful quality of life. Holoprosencephaly is a condition in which the front part of the brain of an embryo fails to form two hemispheres. The condition varies in severity but about 80 per cent of children with holoprosencephaly have facial abnormalities. Takling about Miley's birth Mrs Stooke said: 'The midwives were baffled. The doctors ran the standard tests and Miley passed them all with flying colours. She was completely healthy' Almost all children with the condition experience developmental delays and many have seizures. Most babies with the condition do not survive infancy. The condition affects about one in 10,000 live-born babies. ‘The doctor said it wasn't too late if we wanted to abort the baby - he made it sound almost as if there was no other option,’ said Mrs Stooke.
WHAT IS HOLOPROSENCEPHALY?Holoprosencephaly is a condition in which the front part of the brain of an embryo fails to form two hemispheres. The condition varies in severity but about 80 per cent of children with holoprosencephaly have facial abnormalities. Almost all children with the condition experience developmental delays and many have seizures. Most babies with the condition do not survive infancy. The condition affects about one in 10,000 live-born babies. Source: National Centre for Biotechnology Information ‘I was shocked - it was as if I was having an out-of-body experience. I thought I was watching someone else getting the news. It was a dreadful experience.’ Mrs Stooke added: ‘It was a waking nightmare. We agonised every minute over what to do - and every time I felt her kick inside me, my heart broke. ‘We didn't know whether we could face aborting our baby, but at the same time we wondered how we would cope with a disabled child.’ Six weeks before her due date the couple arrived at the hospital for a meeting where they would give their final decision. ‘Driving to the hospital, even at that late stage, we still didn't know what to do,’ said Mrs Stooke. ‘I just couldn't let go of my child, but I also had to think of the baby's quality of life. ‘My instinct was that if the child would one day be capable of recognising us and of knowing who we are, we couldn't go through with it. ‘We were told there was still a very slim chance that the baby would recognise us. We exchanged a look and both knew instantly that we couldn't agree to the termination.’ The couple braced themselves and Mrs Stooke delivered her daughter by Caesarean section in October 2011. After the birth, the couple, from Bristol, were amazed to discover that, far from being physically deformed, their daughter was perfectly well. Mrs Stooke said: ‘The midwives were baffled. The doctors ran the standard tests and Miley passed them all with flying colours. ‘Two days later Miley had another MRI scan and we were told she didn't have holoprosencephaly at all. In fact, she was completely healthy. ‘The only explanation is that the original imaging and diagnosis had been completely wrong.’ Relief turned to anger as Mr and Mrs Stooke realised how close they came to terminating the pregnancy. They wrote to their local NHS trust expecting an acknowledgement and explanation for the mistakes which had been made. Dr Chris Burton, medical director of North Bristol NHS Trust said: ‘North Bristol NHS Trust investigated Mr and Mrs Stooke's concerns thoroughly and provided a full response in February 2012, in which we expressed our unreserved sympathy for the distress they suffered. Mrs Stooke said: 'Miley's just perfect. I'm just so glad I trusted my mother's instinct and gave my girl the chance to live' ‘We are happy to meet with the family to discuss any on-going concerns that they may have. ‘This was a very difficult diagnosis to make and a number of very experienced and highly skilled professionals considered carefully how to provide that information to the family. ‘Analysing and diagnosing the developing brain of an unborn baby is a difficult process and these cases are very rare. ‘The circumstances surrounding Mr and Mrs Stooke's pregnancy are also very rare and highlight the importance of providing the right support to couples through upsetting times.’ Now two years old, Miley has met all her developmental milestones and walks, talks and laughs along with her brothers Aaron, nine, and Bailey, four. Mrs Stooke said: ‘Miley's just perfect. I'm just so glad I trusted my mother's instinct and gave my girl the chance to live.’
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