A baby born with an ‘rugby ball-shaped’ head had major surgery to cut her skull into four sections before weaving it back together ‘like a jigsaw’.
Lucy Bowran-Pavey, now 17 months, was diagnosed with craniosynostosis – a rare birth defect which causes an abnormally-shaped head.
Her mother Hanna, 39, was forced to have an emergency C-section when her baby’s head got stuck during labour due to its enlarged size.
Without the operation, Lucy – whose skull had fused together prematurely – could have been left severely brain damaged and blind.
Thankfully she has made a full recovery and has since hit all of her milestones.
Lucy Bowran-Pavey had her head glued back together in a lifesaving operation
Parents Hanna and Tom knew something was wrong during the difficult labour
Hanna, an accountant from Willingham, Cambridgeshire, said: ‘We were terrified when we found out that Lucy’s entire skull would have to be re-built.
‘But we knew this would prevent her from developing life threatening issues as she grows.’
‘I knew something was wrong’
Hanna had several late scans in pregnancy due to the midwife’s concern about the size of her baby but was reassured that there was nothing to worry about.
However, during labour the mother-of-two began to panic as the baby did not seem to want to come out after 15 hours.
‘Labour with my first pregnancy lasted three hours and so this time around I knew something was wrong,’ she said.
The top of Lucy’s skull was taken off and cut into sections and re-positioned ‘just like a jigsaw puzzle’ explains Hanna
‘After 15 hours I demanded to see a doctor as I knew something was wrong, nobody understood why my labour wasn’t progressing.
‘I had planned to have a normal labour and it was a complete shock when I was told I would need a C-section.
‘During labour babies skulls usually move but Lucy’s couldn’t as it had already fused together.’
After an emergency C-section, and due to the stress and lengthy labour efforts, Lucy was born with deadly sepsis and a hole in her lung.
She was kept in the neonatal intensive care unit for seven days before her parents were allowed to take her home.
Lucy wears glasses but has recovered well and shouldn’t need any further surgery
But Hanna and her husband Tom were left wondering why their baby’s head was extra large.
‘We asked several times if there was a problem with her skull but everyone told us all babies are born with funny shaped heads,’ explained Hanna.
‘But Tom insisted that the ridge on her head wasn’t normal.
‘At seven weeks old I took Lucy for a routine check-up and that’s when the consultant told us she had craniosynostosis.’
Surgery was Lucy’s only option
The baby spent her first week in intensive care being treated for sepsis and a hole in her lung
In a bid to prevent her skull causing pressure on her brain, in January surgeons cut Lucy’s skull into several pieces and re-positioned it during a five hour long operation.
The medical team at John Radcliffe hospital in Oxford carried out the procedure to prevent pressure developing on her brain.
‘As she was only 10 months old we had only just gotten used to her being at home and so it was really hard to see her go back into hospital again,’ said Hanna.
‘After her diagnosis we knew surgery was the only option, but there was the risk that she might not pull through, it was the longest day of our lives.
‘During surgery the top of her skull was taken off and cut into sections, some parts were cut off completely and others were re-positioned, just like a jigsaw puzzle.
‘The medical team were amazing, they reassured us the whole way through and made sure Lucy was comfortable.’
Lucy’s ‘doing amazingly’
Hanna says her daughter’s appearance after surgery initially was shocking.
‘After the op her face was really swollen and there was such an extreme change in her head shape that she looked unrecognisable.
Tom and Hannah, pictured with Lucy and her older sister, want to raise awareness of craniosynostosis because doctors initially failed to spot the defect
‘We didn’t get many negative comments but I remember the funny looks we used to get at different baby groups I attended.
‘When I spoke to other mums they would make remarks about the size of her head and whether she was rolling or sitting and I felt like she was being constantly compared, so I stopped going.’
But Lucy has amazed the doctors and made a good recovery.
Lucy, pictured playing with her sister, began walking two weeks ago
‘She wears glasses to help with her sight but she shouldn’t need any further surgery on her skull,’ said Hanna.
‘Lucy is now doing amazingly well and has been so much happier since the operation, she is meeting all her milestones and started walking two weeks ago.’
‘She was left with a zig zag scar from ear to ear, but it has since healed nicely and her hair covers most of it.’
There needs to be more awareness
Hanna is now keen to raise more awareness about craniosynostosis after doctors failed to diagnose it initially.
She said: ‘At 36 weeks it was suspected that my baby had enlarged vessels on her brain, but after closer inspection the consultant told us that he couldn’t see anything wrong.
‘Because of this I had a few extra scans, but no one picked up the size of her skull which was off the top of the chart when she was born.
‘It’s scary how limited the knowledge is before you actually get diagnosed and referred, GPs often won’t see one case in their life time.’
