Melanie was born at 29 weeks with multiple complications including omphalocele, a condition that resulted in her intestines residing on the outside of her body. After her intestines were placed inside her body, they were still not located where they should be. This has had an impact on her lungs specifically.
“She was in the NICU for consecutive 148 days fighting for her life. It was a really rough time to see her hooked up to so many different machines and although the staff tells you everything that is going on, sometimes I would just go blank and numb,” shares Yvonne, Melanie’s mom.
Diagnosed with a condition called bronchopulmonary dysplasia, a chronic lung disease, Melanie relies on a feeding tube and oxygen. Melanie also has arm hypoplasia, or the absence of half of her right arm.
After a long road, Melanie and her family arrived at La Rabida when she was six years old to receive primary care from Dr. Qamar and pulmonary services from Dr. Giles.
“Dr. Qamar and his team have been simply amazing. They are resourceful and always available and willing to listen to any questions and concerns that we may have,” shares Yvonne. “Dr. Giles has been very supportive of Melanie’s extracurricular activities. She always encourages Melanie to be a ‘typical’ kid and do the fun things that she wants to do without letting oxygen stop or hinder her,” shares Yvonne.
“I have learned to celebrate the small victories,” says Yvonne. “Most of us can take some Theraflu when we feel sick and will be ok in a few days. When Melanie gets sick, it often requires lengthy hospital stays and missing school which causes regression.”
Like a typical fourth grader, Melanie loves to have fun. “She always has a smile on her face,” says Yvonne. “She doesn’t let her oxygen stop her from doing activities that she likes. She takes her cannula off when she wants to run around, play and just be free.”
This story was featured in the January 2020 issue of Currents, La Rabida's monthly newsletter. To view the January issue of Currents, click here.
