Hello. I'm a member of the Miles for Miracles Boston marathon team in 2018. It is a challenge that I was given a great privilege to take on.
On Patriots' Day there will be someone else running right beside me from Hopkinton to Boston. Someone who will inspire and support me during my winter training. Someone who will share her strong will and incredible courage to help me cross that finish line on Boylston street.
Her name is Emily and this is her story.
Emily and her twin brother, Adam, were born in March of 2012. Mom, dad and big brother Evan were thrilled to meet Adam and Emily and learn that they were both healthy, and they all would be home together in just a few days.
During the first few days of life, Emily’s brother Adam had some complications, but came through them just fine. Little Emily, who was exactly four pounds at birth, was strong, eating well and seemed to be enjoying life already.
On the day they were all scheduled to go home, a doctor stopped in talk about the results of the newborn screening tests that are performed to detect hearing problems at a young age. Emily failed the test and was being referred to Boston Children’s Hospital for further evaluation. Emily’s family was scared, but relieved that they would be going to BCH.
On the day of her appointment, Emily and her mom were greeted by the kind, caring staff of Boston Children’s Audiology Department . They performed extensive hearing screenings on Emily. The result was that Emily was completely Deaf in her left ear and is profoundly hard of hearing. They explained that much research occurs at children’s hospital every day and determining the cause will tell us if anything can be done for Emily, and they recommended an Early Intervention evaluation as soon as possible.
The next stop for Emily was the radiology department at Boston Children’s Hospital where an MRI was performed. We discovered that Emily is missing her cochlear nerve or it is so tiny that it cannot be seen on the imaging. There would never be anything that can be done to repair Emily’s Deaf side, but Boston Children’s does not stop there.
At Emily’s next Audiology appointment. The doctor took much time to explain to Emily’s family about the research that is being performed to help children (and adults) in Emily’s situation. They were testing devices that can “trick” the brain and transmit the sound from one side to the other. The Deaf ear is still Deaf, but the brain makes it seem that patients are hearing from the Deaf side. Since that day, this device is now being used an is an option for Emily some day.
Emily is followed very carefully by Boston Children’s Hospital to ensure Emily’s hearing ear remains strong and functioning, and still, five years later, the doctors always ask about Emily’s progress and challenges. They always listen carefully and provide recommendations for Emily’s care and, most importantly, talk about research and options.