Surgical innovation at Alberta Children’s Hospital gives hope to family of little girl
Everly Tram can show you how old she is, though she couldn’t always.
Today, thanks to experts at the Alberta Children’s Hospital, Everly can do all the things four-year-old girls do. She can count, recite the alphabet, she can paint pictures and colour with crayons, she can cut paper and even make you a necklace. Perhaps her biggest skill, however, is endearing herself to all who meet her.
Like most parents, Everly’s mom Natalie remembers the exact moment her daughter came into the world — the moment life changed forever.
“I was having a C-section and the room was full of people. We were so excited for what was about to happen. I remember it being really noisy,” says Natalie. “And then when Everly came out, the room became silent. Something was wrong and I was terrified.”
A mother’s greatest fear was coming to light.
The next morning, Everly was transferred to the Neonatal Intensive Care Unit at the Alberta Children’s Hospital, where she quickly captured hearts of her nurses, who despite many of them having never cared for a baby with her condition before, treated Everly like she was their own.
“They gave her beautifully knitted blankets and adorable PJs, and were so lovely to her, and to me,” remembers Natalie. “When you’re frightened for your baby, that kindness reminds you you’re not so alone.”
Everly was diagnosed with Apert syndrome, a rare genetic disorder characterized by the premature fusion of certain skull bones that prevents the skull from growing normally. It affects the shape of the head and face, and the fingers and toes are fused together. Though it wasn’t immediately apparent how severe Everly’s condition was, one thing was certain. She would require several operations — some sooner than others.
Everly was just four months old when her parents placed their tiny baby into the hands of her neuroand craniofacial surgeons who performed life-saving surgery to release the fused plates in her skull. This not only allowed her brain the room it needed to grow, the procedure essentially created a new forehead for Everly.
With her brain now safe, the next priority was the painstaking task of separating Everly’s tiny fingers and toes. Each operation required two plastic surgeons working in tandem, each operating on either a finger or toe. Everly has had four surgeries so far — each ending up with three appendages in casts. She’s grown up in casts while her hands and feet healed, and has had to relearn to walk each time.
Everly’s most recent surgery was this past August, when her surgeons separated her ring and middle fingers on both hands. Everly’s mom videotaped the casts coming off just days after surgery, not fully realizing how profound a moment it would be.
“She was just so excited,” says Natalie. “‘Look Mommy! I have five fingers!’ as she counted each digit separately for the first time in her life. ‘Now I look just like you.’ That was a very special moment.”
Natalie says being Everly’s mom means she is in constant “Mama Bear mode” when it comes to how people treat her daughter. Everly, though, takes everything in her stride.
“She’s a very strong and resilient little girl,” says Natalie. “She’s been through a lot. She loves spending time with her many little friends. She has the sweetest smile and is always so kind, even at her young age. Once people get to know her, they just can’t help falling in love with her.
“As much as we didn’t ask for this journey, our lives truly changed the day Everly was born. And it changed in amazing ways. She taught me, personally, what’s truly important in life and that’s unconditional love.
“We are so fortunate to be surrounded by amazing family, friends and the wonderful people at the hospital who understand that the world is full of people who come in different packages. We are all beautiful and have something valuable to contribute,” explains Natalie. “Everything I’ve learned — about strength, about beauty, about what true love is — all the things I needed to learn to give Everly the most beautiful life possible, the people at the Alberta Children’s Hospital were my first teachers. And I am eternally grateful.”
You can hear more of Everly’s incredible story — and many others — at the Country 105 Caring for Kids Radiothon Feb. 6, 7 and 8. This year, all donations will be TRIPLED so your gift can have THREE TIMES THE IMPACT for children and families at the Alberta Children’s Hospital. Visit kidsradiothon.com for more information.