Beverley was a bit nervous about publishing her brave daughters story in a national newspaper. We helped her all the way and made sure it was told in the manner she wanted it to be. You can read Gemma courageous true life story below.
Real life: I was terrified my baby was going to be a freak
When she discovered her unborn baby would be born dreadfully deformed, Beverley Gregory couldn’t bear the thought of meeting her. But as soon as she held Gemma in her arms, she fell in love..
Beverly Gregory with her daughter Gemma
As you watch three-year-old Gemma Gregory cuddle up on her mum’s lap, it’s obvious the two-year-old cutie adores her mummy – and vice versa.
But when 38-year-old Beverley discovered her third child would be born with disfiguring Crouzon syndrome she was overwhelmed with fear and dreaded seeing her new baby for the first time.
The condition is so rare it affects just 15 babies in a million, and until three quarters of the way through her pregnancy, doctors didn’t even realise there was a problem.
Thankfully, when the tiny tot was placed in her arms, all of Beverley’s worries melted away and she felt an instant, and unstoppable, wave of love.
But although she’d succeeded in winning over her mother, Gemma’s real battle was only just beginning.
As each day passed, the syndrome altered her features until she looked less and less like the baby Beverley gave birth to. Gemma’s forehead was tiny and because the mid section of her face hadn’t grown after 20 weeks’ gestation, it wasn’t big enough to hold her eyes in place properly.
So at five months old, intensive surgical work began to aid her breathing and help change the appearance of her face.
And now, two years on, and after two major 10-hour operations to create a new head and face, the happy little girl looked so different that even her own mother didn’t recognise her at first.
“With my third pregnancy, I was huge,” recalls Beverley. “Much bigger than I had been with my other children Carl and Lea.
“But I hadn’t been eating for two. My consultant blamed a build-up of excessive fluid, which can be quite common in pregnancy.”
Because of her situation, Beverley was given a late scan at 31 weeks. But the mum-of-two wasn’t worried and just thought the doctors were being extra careful.
So she was shocked when she was told her third baby – a little girl – had the rare Crouzon syndrome.
“I’d never heard of it but when the consultant at Oxford’s John Radcliffe Hospital explained it meant the bones in our baby’s skull had fused early in
pregnancy, preventing parts of the head and face from growing, I was horrified.”
Beverley and her husband Mark, 41, were warned if they decided to go ahead with the pregnancy, the baby would need several major operations to create space for her brain to grow, help her breathe and improve her appearance.
“We were shocked they thought we’d even consider a termination. Mark told them in no uncertain terms there was no way we weren’t keeping this baby. As far as we were concerned, she was already part of the family.”
Back home, Beverley looked up the condition online. It was a big mistake.
“I soon wished I hadn’t. The photographs of sufferers online, with their tiny foreheads, beak-shaped noses and bulging eyes scared me even more. I broke down –it was so bad I actually started laughing in disbelief until I cried.
“I was literally wailing to Mark that I was going to give birth to a ‘freak baby’.
“It’s important to be honest here because I know other parents in our situation will appreciate that. But it couldn’t have been much worse.
“Mark tried to be optimistic, telling me to ‘wait and see’ and that whatever happened we’d love our child and cope with whatever the future brought.
“But I couldn’t cope with the fact that because the condition is so rare – it affects only 15 in every million babies – everything about it was so unknown.”
But despite how terrified they were, the couple didn’t consider a termination for a moment.
They told close family and friends their baby had Crouzon syndrome in order to prepare them but at that stage, no one really understood what it meant for the baby. Despite her efforts to prepare everyone else, before her planned C-section on 21 January 2009, Beverley admits she was terrified about meeting her own baby.
“I cried my eyes out before I went into theatre. I’d never felt so frightened in my life,” she recalls.
But when baby Gemma was placed in her arms before being whisked away to the special care baby unit, Beverley’s worries soon began to
“The sense of relief was unbelievable,” she recalls.
“I’d had sleepless nights about this moment, fearing all sorts, but Gemma just looked like a beautiful baby girl. I loved her immediately.”
But soon the differences became clear. “As each day passed, she looked less and less like the baby I gave birth too,” says Beverley. “But by then it didn’t matter because we were so in love with her.”
Gemma’s forehead was tiny compared with the rest of her face and her eyes bulged so much there was a real risk they could fall
“Her consultant warned me that because the mid-section of her face hadn’t grown after 20 weeks’ gestation, it wasn’t big enough to hold her eyes properly and there was a danger of them popping out under the pressure when she cried,” says Beverley.
“It could happen any time so I literally held them in whenever she cried. Gemma also had problems breathing and at four months old, had a tracheotomy fitted to help this and to ease some of the pressure in her head before surgical work started to help change the appearance of her face.”
At five months, Gemma had her first major op to remove the lump of bone which was fused from the top of her skull.
“This involved literally bolting a giant metal cage on her face to pull out the sunken middle section and help her to breathe,” says Beverley.
After 10 painful hours in surgery cutting and remodelling her skull, the cage was put in place. It meant baby Gemma couldn’t be cuddled or kissed properly. “Every day felt like an eternity,” remembers Beverley.
But slowly under the metal bolts and wires Gemma’s new face started to take shape. And when the cage came off three weeks later, it was like looking at a different little girl.
“It was amazing. The changes were massive. For the first time in her life, Gemma actually had little cheekbones,” beams Beverley proudly.
The op released loads of pressure from Gemma’s skull and meant the tot could cry without the danger of her eyes falling out.
And with more space for her brain to grow Gemma started meeting her milestones more rapidly.
“She’d already started to sit up,” recalls Beverley. “But now she started pulling herself up on the settee, too. By 14 months she was walking, just like her big brother and sister.
“And Gemma’s appetite improved, too, probably because her breathing was easier. She was burning so many calories just trying to breathe. She was so much happier in herself and couldn’t stop smiling – and neither could we.”
Then in April last year, three months after Gemma’s first birthday, she had her second major op. This was to create a new round head instead of
the square-shaped one she had.
Surgeons cut into her old skull and remodelled it, stretching the skin back over it.
Gemma Gregory after her operation with sister Lea and brother Carl
“She looked so little as she was wheeled down to theater. Like any mother, I wished I could have gone through it for her,” she says.
But when she walked on to the hospital ward that evening, Beverley did a huge double take.
“I can’t believe I actually walked into the high dependency ward and looked at the child lying in front of me before realising it was my own daughter,” laughs Beverley.
“But that’s how different she looked. Even Lea exclaimed: ‘Look! Gemma’s got a round head!’”
But unfortunately, as the weeks passed the wound became infected and the following month, the toddler was back in theatre having skin from her bottom grafted on to her new head. After spending her first two years in and out of hospital and going under general anaesthetic 33 times, Gemma’s life now feels more normal, although she will need more operations to make her skull bigger as she grows up.
Rather touchingly, Beverley says despite how lovely her daughter looks now, she misses the ‘old Gemma’.
“Most children retain some physical features from babyhood, but you’d never believe Gemma’s baby photos are of the same girl.
“Physically it’s like having a new daughter and takes some getting used to. In fact, the only physical feature that’s stayed the same is
“But underneath it all she’s still loving, cheeky, sweet little Gemma and as soon as she opens her mouth you forget that she might look different – it’s just Gemma.”
Last month, Gemma was able to attend her big sister’s birthday party for the first time ever. Watching her run around and play with
the other children without a care in the world was another significant milestone.
And as the kids happily played for the camera in their best party dresses, Gemma’s beaming smile gave no clue to what she’s been through.
“Gemma’s doing so well we can’t not be pleased. It’s difficult to know what the future holds, but to worry would take away the joys of today so we don’t dwell,” Beverley says.
“Yes, there have been complications along the way and there have been times when it’s been very hard, but unfortunately that’s life and we have to get on with it the best as we can.
“Gemma’s not your average- looking child, but we love her for exactly who she is. Most importantly, she’s happy and is doing everything a two-year-old should be.
“Like any other toddler, she likes nothing more than playing – and fighting – with her brother and sister. And while some things will change as she grows up, I’m confident that’s one thing that will stay constant!”