Not all of NCH Hospice and Palliative Care patients are children. The team also cares for young adults with diseases that are primarily childhood diseases. Twenty year old Natasha is one of the team’s young adult patients. Tasha was born with Epidermolysis Bullosa (EB). EB is a genetic illness, that causes the skin to be exceptionally fragile and blister in response to minor injuries or simply friction from clothing or shoes. EB has no cure.
Treatment focuses on minimizing skin damage and treating the wounds when they occur. Patients with EB are at high risk for infections which can cause serious complications. Tasha has a particularly severe form of EB. Her skin was so damaged at birth she was immediately admitted to the Intensive Care Unit.
Most of Tasha’s childhood was very different from her peers. She remembers that she wasn’t allowed to run, jump, play in the playground, or play with other children because of therisk of injury to her skin. Tasha cannot remember a time when she didn’t have bandages on her arms and legs. Tasha was frequently hospitalized. She attended school through the eighth grade, but then because of her health, she was home schooled.
Tasha’s main treatment team is the EB Center at Cincinnati Children’s Hospital. She goes to the Center every week for whirlpool treatments and dressing changes. Tasha is in the hospital for 23 hours and then returns home. The NCH Palliative Care team, working closely with the team from Cincinnati, provides Tasha’s care at home. Tasha receives regular nursing visits and occasional visits from the social worker, chaplain, and music therapist. Tasha especially appreciates her nurses. “I don’t have my pain pump in the car when I’m driving home from Cincinnati, so by the time I get home I’m hurting pretty bad. The nurses meet me here and hook me up right away. They are so nice! They even got me a birthday card on my birthday!”
Although Tasha’s life has been difficult, she finds ways to enjoy it. Tasha loves reading, music, and art. She enjoys going to the mall or the movies and the acquisition of a wheelchair van recently makes this much easier. Tasha graduated from high school this spring and was able to attend both her prom and her graduation.
Tasha has received a lot of attention. She was featured on People.com, foxnews.com, seventeen.com and 10TV. You can see a video of Tasha’s prom story and one of the NCH Palliative Care nurses caring for Tasha at home here: http://www.10tv.com/content/stories/2015/07/09/teenager-overcomes-medical-challenges-to-attend-prom.html.
You can also see a video of the Cincinnati Children’s Hospital team making it possible for Tasha to go to the prom here: https://www.youtube.com/watch?v=qyHFideeZ1A