Meet Mela

The Zayed Centre for Research has a dedicated Craniofacial research team of clinicians and engineers, focused on using 3D technology to improve the outcome and safety of craniofacial surgery for children born with conditions affecting their head and/or face. Mela, 9, has been coming to GOSH since she was a baby. She was born with a rare craniofacial condition called Apert syndrome. 

When Mela was still developing in the womb, many of her bones, like in her hands, feet and skull, prematurely fused together. It affects her in a lot of different ways, including her eating, hearing, breathing, walking and speech. Mela’s mum Paula shares her story: 

“From the day Mela arrived at GOSH, we knew our beautiful daughter was in good care. The staff were incredible since day one when Mela came into the world.

“In the last eight years, Mela has had more than 20 surgeries. She has had springs put in her head to ease the pressure on her brain. Mela will continue having surgery as she grows to make sure she’s as comfortable as she can be.

“Every time she’s had to have a procedure, it’s been very intense and emotional for our family. It’s never easy watching her fall asleep under general anaesthetic. But no matter how difficult times have been, Mela’s been surrounded by doctors that know what she likes, what she doesn’t and what makes her feel comfortable. After every surgery, they give her the space that she needs, but make an effort to check up on her regularly.”

Mr Owase Jeelani, Consultant Paediatric Neurosurgeon, who works very closely with the Craniofacial team, has operated on Mela. “Mela was one the youngest patients to have a specific type of neurosurgery. Even after Mr Owase Jeelani had operated on her, he was doing procedures on other children. He must have been there from the early hours in the morning, but he was still so patient and smiley. He took his time with each child and was still joking with Mela. He even checked on her early the next morning. That melted my heart.

“Because the severity of Apert syndrome varies so much, Mela is closely monitored and has regular appointments at GOSH. Every year, her team of specialists assess how she’s progressing and decide what needs to be done next to improve her wellbeing. I can’t fault the care we’ve received at GOSH. We’ve been in very good hands all round.”

Learn more about the Zayed Centre for Research into Rare Disease in Children