"Our family has had to fight every step of the way, but we are used to that process by now, and know that the fight is worth it in the end."
About: Bailey (age 18)
Age Range: 14 to 21 years
Bailey is a sociable, sweet teenager from Lawrenceburg, Tennessee. She is eighteen years old girl and she has Down syndrome. Bailey was also born with two heart defects, which required open heart surgery for a full repair at two months old. She did not require any further heart treatments until this past year when she received a pulmonary valve replacement. Bailey also has severe dysphasia and tracheobronchial malacia, which causes her to aspirate on any and all liquids.
Bailey is an active member in her community. She participates in the Special Olympics bowling, basketball, bocce, and track and field events. She is the girls' basketball and volleyball manager for her high school, and is very involved with activities at our church. Bailey loves to get on social media, text her friends, hang out, and eat Mexican--which is her favorite, because she's gluten-free and that's one of the few types of food she can eat. Bailey was also recently voted homecoming queen.
Our family resides in Lawrenceburg, TN, where we have lived for six years, but we have been within the area for about 20 years. Lawrenceburg is a small town where everybody knows everybody, which has its advantages and disadvantages.
Bailey currently attends high school and is projected to receive an occupational diploma. She is the first student in the county to go through this particular program and to receive a work-based learning experience. Bailey had to change schools earlier this year, because we started seeing academic and behavioral regressions. Prior to these noted regressions, and up until her sophomore year, Bailey participated within an inclusive general education setting at school. However, during her freshman and sophomore years she had several surgeries. We decided that--academically--it was too much for her. She was really struggling, so we decided we were going to move her into the occupational diploma realm--where she would be getting job skills. Bailey was the first student to actually do this program in Lawrence county, and she is excelling now. The students there really embrace her, and she is so much happier.
Bailey's disability and other health diagnoses impact her day-to-day life. She has severe dysphasia and tracheobronchial malacia, which impedes her ability to swallow, causes her to aspirate on any liquid, has created respiratory issues, and has led to several hospital stays throughout her life. Because Bailey cannot take any liquids by mouth, her doctors put a G-tube in prior to her open-heart surgery when she was 16 years old. The doctors were hoping the G-Tube would only be a temporary fix, but shortly afterwards, we realized the G-Tube is now something she will have her entire life...and she hates it.
Up until last year, Bailey received intensive swallowing therapy to strengthen the muscles in her throat and help to alleviate some of her invasive aspirations. Our private insurance company recently decided they were no longer going to pay for the therapy. Living in a small rural town, some services can be harder to come by. The swallowing therapy is critical for helping Bailey manage her severe aspirations. Since she stopped receiving swallowing therapy, Bailey has been in and out of hospitals. Even though she can feed herself, Bailey has to go to the school nurse twice a day to eat. She has to eat with the nurse so that somebody's is there in case something happens. Last Friday, her tube got clogged and so then I had to go up there and see about it. Without therapy, these types of issues tend to manifest in a very cyclical pattern.
Bailey was seeing a local dentist who was only three blocks away from us. However, because of her severe aspiration diagnosis, the dentist dropped her as a patient. They were nervous about doing her dental health here in town, and they didn't want to be the reason she gets pneumonia or be liable for any issues like that. So now, we have to drive to a dentist's office two hours away.
Bailey was also a patient at the pediatrician's office 30 minutes from our home. However, the providers were unable to manage Bailey's health-related issues. Subsequently, Bailey's primary health care provider and specialists are now at Vanderbilt Children's Hospital. We have to travel an hour and a half to see: a pulmonary specialist every three to six months, an endocrinologist every six months, and a cardiologist once a year.
Living in a rural community means there are fewer services. It also means there are fewer quality services. Our family has to travel an hour and a half to two hours to Nashville to see any and all of Bailey's specialists. We have to travel two hours to see an adequate dentist. Telemedicine might be a beneficial option to help make services more widely available and accessible. I am familiar with how other rural areas are using technology to provide communities with health care services, but I am unaware if those supports are being used in our town, or if it's even a feasible option for the families in our community.
Overall, Bailey receives all the services she needs, but it has been a difficult road to get there. I am the mom who will fight for what my daughter needs, but I think a lot of families in rural communities end up accepting what is given to them and not fighting for services. It's often because they don't know they can. Our family has had to fight every step of the way, but we are used to that process by now, and know that the fight is worth it in the end.
Updated on Tuesday, January 9, 2018