BENEFITING: Massachusetts Eye and Ear Infirmary
ORGANIZER: Massachusetts Eye and Ear Infirmary
EVENT: 2016 Boston Marathon
EVENT DATE: Apr 18, 2016
Xavier's Story (As told by his mother)
By looking at Xavier, you would have never guessed that he was born with a life threatening birth defect. He was thriving, top percentile for weight and height, meeting his milestones and a happy baby. He was always laughing and smiling. Some things never change.
But, his breathing is the first thing people would notice. He sounded like Darth Vader. At times you could see his neck struggling for air, and he was never happy eating although he was always hungry. I can't count the number of ER or urgent care visits we made in those first five months. Each time the doctors would say the same thing, "he is thriving, his oxygen is not too low, and he seems happy, he will grow out of it".
It wasn't until one night in late November after putting Xavier to bed that I heard a noise I had never heard before... He was no longer struggling for air but fighting for it.
Dr. Hartnick diagnosed Xavier with tracheomalacia and subglottis stenosis. His airway was the size of a coffee stirrer and he needed immediate surgery or a tracheotomy.
As parents of a precious five month old, that we have been told over and over again "he would grow out it"- we were stunned and numb. What do we do? Dr Hartnick did not pressure us in making a decision immediately, but did not let us waste time. He did not give us false hope, clearly stating that if we chose surgery, Xavier could very well need a trach. And if we chose a tracheotomy, he might need surgery. What he gave us was strength, patience, and understanding. What he gave us was more than we could have asked for- he truly cared for our son, our most precious treasure.
We chose tracheal reconstructive surgery. Dr. Hartnick took a piece of Xavier's ear to widen his airway. Xavier spent two weeks in the ICU, one week on a ventilator, sedated and paralyzed. The second week weaning off the medication he was on.
Now Xavier is five and still our precious treasure, but has also proven to be a courageous fighter. He is active, plays basketball, loves to run, read and swim. He is just like any other five year old but is extraordinary... At least to his parents.
Thank you is not enough to say to Dr. Hartnick and his team, but we say it anyway. We thank him for helping our son to breath and for being a part of so many lives and stories that are similar to ours.
By donating to Team Eye and Ear Pediatrics, you will be helping children have surgery to breathe and speak without a trach. We are doing research to develop and trial new technologies to help cure airway obstruction.
Below is more information about Massachusetts Eye and Ear.
Massachusetts Eye and Ear clinicians and scientists are driven by a mission to find cures for blindness, deafness and diseases of the head and neck.
Each year almost 300,000 people - adults and children - from more than 80 countries seek care at Mass. Eye and Ear and more than 20,000 of them undergo life-changing surgery.
Mass. Eye and Ear is home to the world's largest vision and hearing research centers, offering hope and healing to patients everywhere through discovery and innovation. As a Harvard Medical School teaching hospital, Mass. Eye and Ear trains future medical leaders in ophthalmology and otolaryngology through our highly competitive residency and fellowship programs.
Mass. Eye and Ear is ranked #1 in the nation by U.S. News & World Report.