Why I Participate
By parent partner and advocate Tonya Bowman
March 18, 2013
|Tonya Bownman and her daughter Jasmyn.|
I’ve been involved with NICHQ’s Improving Hearing Screening and Intervention Systems (IHSIS) project for several months now. My path to advocacy began with the birth of my first child 12 years ago. My daughter, Jasmyn, was born at 24 weeks. I had been put on bed rest two to three weeks prior to her birth. It was a very surreal experience. I had all the normal expectations of a first pregnancy then WHAM! I was so not prepared. I remember thinking this wasn’t the way it was supposed to happen. You’re supposed to get nine months, lots of pampering and a wonderful baby shower.
Jasmyn’s first week was really, really rocky. There was a great chance that she would not survive. Her right lung collapsed on day three. On day six, the medical staff couldn’t get her stats up. I had gone out for errands and one of the nurses called me. She said that I shouldn’t break any laws but get back to the hospital as soon as possible. My heart was racing, not knowing what to expect. I didn’t know if Jasmyn would be alive when I got there. The Newborn Intensive Care Unit (NICU) staff met me at the door with red, swollen eyes. They cared about both of us. Jazzy survived but there would be multiple ups and downs during the next four months. We were sent home after our long stay with an oxygen tank and an apnea monitor for Jasmyn.
After leaving the NICU, we spent the next year and a half in and out of the hospital for various reasons. There were multiple therapists and doctors’ visits almost every day. Eventually, I quit work to take care of Jasmyn full-time.
Jazzy’s hearing loss was diagnosed at 18 months. She had passed her hearing screening before leaving the NICU. In addition to being on a ventilator in the NICU and taking multiple medications, Jasmyn also experienced many ear infections during that first year of life. At that time, no one mentioned to me that infants who need to stay in NICU have a greater risk of hearing loss due to a variety of reasons. Her pediatrician referred us to an audiology clinic, which confirmed a bilateral sensorineural hearing loss, cause unknown. She was fitted with hearing aids in both ears by age 2.
Being Jasmyn’s mom opened the door for my current job – a newborn hearing parent consultant for Family Voices of Tennessee. I had been a stay-at-home mom, taking care of Jasmyn (as well as my son Jeffrey), but we had reached a point where she was in a stable place. I was ready to go back to work. In my search, I found the advertisement for the job at Family Voices. The parent advocacy organization wanted a parent of a child who was deaf or hard of hearing. The job was tailor-made for me. I eventually took on the additional role of parent resource specialist (now called parent navigator).
It has been great to see the professional side of things while having the knowledge of a parent of a child with hearing loss. I’ve gained much knowledge and been blessed by colleagues, providers, and others, and like representing families who can’t be at the table themselves.
I’m so proud to be a part of this IHSIS collaborative. I have great admiration and respect for my team members and they insist the feeling is mutual. I so enjoyed meeting the other parents from teams across the country during our collaborative sessions. It’s empowering to be around other passionate, dedicated people for a common goal … and to see we’re making a difference.