It’s tough raising a young girl these days, with social media and advertising creating unrealistic expectations that can impact a child’s self esteem. For Melanie Davlut, there are even more worries about how her 11-year-old daughter Keira sees herself.
“When she looks in the mirror, the mirror image is distorted. That is going to be a challenge for her growing up to know that what she sees in the mirror isn’t what she really looks like,” says Melanie.
That’s because Keira continues to have limited vision – a remnant of her craniosynostosis at birth.
“When she was born, we noticed her right eye was a lot smaller and the left eye seemed more open and her head seemed a bit bulgy, so we talked to our pediatrician and he said it could be just from the c-section delivery and to wait and see.”
But by the two-week baby check up, Keira’s pediatrician had determined that she needed an MRI and X-ray at HSC Winnipeg Children’s Hospital. The MRI showed Keira’s brain was healthy, but the X-ray showed one of the five sutures in her skull was fused.
In infancy the sutures of the skull should be flexible to allow the brain to grow and protect the brain from minor impact such as when an infant is learning to lift her head, roll over, or sit up. But Keira was diagnosed with left coronal craniosynostosis, which means a suture in her skull was fused at birth, causing her head shape to grow abnormally.
Craniosynostosis happens in one in every 2,000 births. Without surgery, it can cause vision loss, facial disfigurement and developmental problems due to the skull putting pressure on the growing brain.
Keira had her first surgery in September 2011 at just 9 months old. This surgery involved an incision across the scalp and placement of re-absorbable plates to open the fusion, relieve pressure and support the shaping of her skull to naturally fuse back together as she grows. She then followed up with an ear, nose and throat doctor at the hospital for ear tubes and adenoid surgery.
She had another surgery in 2018 which focused on an incision in her forehead to reduce an area of the skull that was sinking. Keira regularly follows up with several doctors at Children’s Hospital as she grows because her skull is constantly changing. This includes seeing a dental physician as her jaw is too small for her adult teeth coming in, a plastic surgeon for consult on additional facial surgeries, and an ophthalmologist at the hospital for her ongoing vision challenges.
“The last surgery was difficult for her as it took about 6 months to heal. The first month was the hardest being off school but she had some friends come for play dates…they just had to do quiet activities with her,” says Melanie.
Melanie says all the doctors and nurses at Children’s Hospital have provided excellent care to Keira.
“After her surgeries the PICU and CK3 ward staff are always exceptional. Without them Keira wouldn’t be the vibrant young girl she is.”
Despite the challenging start to life and the ongoing visits to Children’s Hospital in her first 11 years of life, Keira is a confident girl who loves learning piano, performing in musical theatre, playing Roblox online with school friends, and doing anything she can to support Children’s Hospital Foundation of Manitoba. Her DQ dance for Children’s Miracle Network in 2020 was even featured on national social media channels to help raise funds for local children’s hospitals.
Melanie says Keira understands her condition and takes it in stride as part of who she is. “We hope this understanding and confidence continues into her teens. She is active, a performer, and really her own person,” says Melanie.