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Ruby Merlyn was born via C-section at just 40 weeks. It wasn’t these circumstances of her birth, however, that made her doctors so confused. It was the rare birth defect that was ravaging her entire skull and body that caused the shock.
When Ruby was born, her body was swollen, her skull was misshaped, and there was a burst blood vessel in her face that made it look like she only had one eye.
Doctors immediately performed a myriad of medical tests on the little girl, hoping to diagnose her condition and best help her as soon as possible. But the results were just as puzzling.
Ruby’s eye sockets weren’t aligned evenly in her skull, causing one of her eyes to appear higher than the other. Cysts spread across her left arm and leg, making the bones more liable to break than other infants’ limbs. On Ruby’s spine were several lipomas, or fat deposits.
Her skull was the worst. There were holes in it and a fissure ran through it, signaling its lack of full formation during her mother’s pregnancy.
Mother Toni Chatterton, age 25, said, “It looked like [Ruby’d] been shot with a shotgun.”
But even in spite of Ruby’s maimed appearance, Chatterton immediately fell in love with her daughter. “It didn’t matter to me what she looked like. As soon as I held her, I fell in love,” she said.
“I grieved briefly for the baby she could have been, but that passed quickly. I knew I was lucky to have her.”
Doctors allowed Chatterton to bring Ruby home for a few days before asking that she return to the hospital to begin her long treatment process.
The first surgery – of many to come – involved removing the dermoid cyst that had formed in one of her eyes. In its place, doctors inserted a false eye and also shifted the location of her left eye socket so it matched the location of her right eye.
Ruby, however, didn’t take very well to the implant. “She kept taking it out and chewing it,” her mother laughed. “I decided to give that a mess. It was a health hazard.”
Over the next several surgeries, doctors will gradually “rebuild” Ruby’s appearance.
Thankfully, in spite of Ruby’s physical appearance, she is growing and progressing well, hitting all the milestones she’s meant to hit at the right time.
Now 20 months old, she’s begun to walk a little and has developed a very “funny and naughty” personality. “She is registered blind,” Chatterton reported, “but apart from that is fine.”
Unfortunately, Ruby has already begun to face the bullying and insults of other children who have seen her. “Other children have called her ugly,” her mother mourned before launching into a description of the next surgery Ruby is set to undergo.
In March, doctors will begin to reconstruct her skull.
“It will be like a jigsaw,” her mother explained. “They will take orbital bone out and two pieces of bone above it, and fix them together.”
Doctors have also, finally, diagnosed Ruby’s condition: encephalocraniocutaneous lipomatosis, a medical condition that causes brain, skull, and skin deformations.
Chatterton loves that doctors often come up to her to talk about Ruby. “She is a fascinating case study,” Chatterton said, “But I always knew she was amazing.
We wish this little girl the best of luck as she moves forward with her surgeries.
