As Jenna Carlin’s newborn baby girl, Ava, lay sleeping in her arms, she couldn’t take her eyes off her little face.
It was December 2015, and like most parents, Jenna and her fiance, Matt, both 31, thought their daughter was the most beautiful baby in the world.
‘But it was as I was taking in every detail that I noticed something about her head didn’t look quite right,’ Jenna says.
‘It looked out of shape, a bit squashed.’
After pointing it out to their midwife, Jenna and Matt were told that it was probably a result of the way Ava had been lying in the womb and that it would even out over time.
‘We took Ava home later that day and introduced her to her older brother, Luca, then three,’ Jenna remembers.
‘He doted on her, always offering to give her a bottle and running to get one of us the minute he heard her cry.’
With their family complete, Jenna and Matt decided to set a date for their wedding.
‘We’d been engaged for several years, but with having Luca, and then Ava, the timing had never seemed right until that moment,’ Jenna says.
But as Ava turned a month old, Jenna struggled to focus on the wedding planning.
Instead, she was worried about Ava.
‘Her head still seemed a funny shape and her forehead looked stretched like she had a lump sticking out of it.
‘And one of her eyes was circular, while the other looked oval.’
Matt agreed with Jenna, and in January 2016, their health visitor suggested they take Ava to a doctor.
Their GP tried to reassure them that facial deformities were normal after birth, but Jenna was beside herself.
‘I know you’re not supposed to look up symptoms on the internet, but from what I’d read online, I suspected Ava might have craniosynostosis,’ Jenna recalls.
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