30 days with my hero: Mason’s Riley Story
Some people never get to meet their hero, but I gave birth to mine. 30 days, that’s how long I got to spend with my hero son, Mason William Baines.
Our Riley story began when Mason was prenatally diagnosed with a frontal encephalocele. It is a rare condition in which the skull fails to close properly and causes brain tissue to leak and form outside of the skull. Before that November 1, 2011 day, I had never heard that word before and little did I know it would change my life forever. I began seeing Riley pediatric neurosurgeon Dr. Joel Boaz to discuss possible outcomes and treatments. I wasn’t given a great prognosis due to the amount of brain tissue forming inside Mason’s encephalocele, but I felt hopeful being in the capable hands of all the Riley doctors and staff.
The Riley Neonatology doctors weren’t sure if Mason would be able to breathe after birth, or if he would be able to survive birth, but at 11:22am on February 23, 2012 Mason William Baines let out his first and only cry. That cry was like music to my ears as the nurses rushed to get him stabilized and over to Riley for an MRI scan.
Mason spent the next four weeks in the NICU on a ventilator while the doctors and I had the daunting task of deciding Mason’s course of treatment. While we were in the NICU, all of the nurses and staff made me and my family feel welcome and feel as if Riley was our home. The family support team arranged scrapbooking days, provided lunch and even hosted a baby shower for all of the NICU mommies.
Mason’s doctors finally decided that surgery wasn’t the best course of action for Mason, so our next step would be to wean Mason off the ventilator and possibly send him home on hospice. We took Mason off of the ventilator on March 22, 2012.
My one wish for Mason that day was to take him outside for the first time. There were no windows in the old NICU and Mason had never felt the warmth of sunshine on his skin. I wanted him to experience the beauty of that. Mason lived off the vent for 12 hours before he peacefully passed away on Friday morning March 23, exactly a month after he was born.
Most Riley stories are success stories, but despite the tragic end to Mason’s story, I want people to know that there is hope in stories like mine and Mason’s. A few weeks after Mason’s death, I received a letter from the Embracing Hope program offered through Riley Hospital. It offers support to families that have lost children at the hospital. I had no clue that my Riley story was still being written even after Mason’s stay was over. I was able to receive one-on-one support as well as mailed literature that made the grieving process a little easier. I don’t know how I would have made it through without the love and support of Riley Hospital for Children.
Recently, I have done some volunteer work through the Friends of Riley, which is a group of young professionals who help Riley Children’s Foundation through fundraising efforts. Riley has done so much in my life and whenever I get the opportunity to give back I want to take advantage of that. I’m proud to call Riley Hospital Mason’s home and I’m happy to say it’s my home too!
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