Blake is a fighter, but it hasn’t been easy.
Born on July 19, 2012, Blake was diagnosed at birth with Pierre Robin syndrome, a rare condition characterized by a smaller-than-normal lower jaw and often accompanied by hearing loss and cleft palate. (Thankfully, Blake doesn’t have either of these symptoms.)
Dr. Ananth Murthy, director of Akron Children’s plastic and reconstructive surgery center, examined him shortly after his birth and decided to postpone surgery on Blake’s jaw until he was a little older.
The next 3 months were a struggle for his mother, Rachael. Because of the position of his jaw, Blake often took over an hour to finish a bottle. While no mother is ever in a hurry for her child to have surgery, Rachael knew the time had come.
“We decided to go ahead with the surgery in November when he was about 4 months old,” said Rachael. “Dr. Murthy placed metal bars in Blake’s lower jaw that were attached to screws that came out at the top of his ears. For the first 10 days after surgery I had to turn the screws 3 times a day.”
Hopeful that the bars had done their job and their days of surgery were over, Rachel took Blake to have the bars removed 4 months later in March 2013.
And that’s where the complications began.
“Blake’s jaw had grown outside the bars, necessitating their removal through the inside of his mouth,” Rachael said. “Shortly after that Blake started getting nonstop ear infections.”
At less than a year old Blake went through 4 different sets of ear tubes that kept clogging and falling out. He also had his tonsils and adenoids removed.
More complications arose in September 2013 when Blake experienced bleeding from his ears. He was diagnosed with a ruptured eardrum and placed on multiple courses of antibiotics.
When the bleeding worsened Blake underwent emergency surgery that revealed he had mastoiditis – an infection of the mastoid bone in the skull (located behind the ear).
A culture of his left ear uncovered MRSA, a dangerous and hard-to-treat staph infection.
“At this point he was admitted, placed on antibiotics around-the-clock, and underwent 7 surgeries during his months-long inpatient stay to debride his ear,” Rachael said.
“Blake started to leak brain fluid out of his ears,” said Rachael. “I was feeling helpless, and the doctors were at a loss too.”
More surgeries uncovered the infection had literally eaten away the bones in Blake’s ears responsible for hearing – rendering him completely deaf.
“From November 2014 through June 2015 Blake endured approximately 20 neurosurgeries to experiment with different kinds of shunts and drains that would drain the fluid and also not interfere with his cochlear implants,” said Rachael.
Through it all Rachael has remained optimistic about Blake’s future, and thankful for the care he receives at Akron Children’s.
“Dr. Tsulee Chen and Dr. Gwyneth Hughes have never given up on Blake. They always listened to my concerns and understood how I was feeling,” she said. “Dr. Murthy is so loving and caring with him. I know when any of them take Blake into surgery that he’s in good hands.”
Blake is now walking with braces on his feet, learning sign language and receiving physical, occupational and speech therapy at home.
Although he has some developmental delays, Rachael is hopeful that homeschooling, which is set to begin in the fall, can help Blake catch up on some milestones.
“If you think there’s something Blake can’t do or overcome, he will prove you wrong,” Rachael said.