Clara Bergs’ life began as a struggle when she was born premature, weighing less than five pounds. As a newborn, she was diagnosed with a rare type of heart disease, truncus arteriosus, and was also diagnosed with DiGeorge syndrome, a genetic disorder affecting, amongst other things, the development of her immune system. On top of that, Clara’s nasal cavities were blocked, preventing her from eating or breathing on her own. She was immediately put on a ventilator and had a nasogastric (NG) feeding tube inserted through her nose for nutrition.
For the first few months of her life, Clara underwent various surgeries for her heart condition and to open her nasal passages. Clara spent the first 16 months of her life in the hospital, and she was constantly connected to a ventilator and NG tube, which caused her to gag every time she moved.
In November 2002, at five months of age, Clara weighed barely six pounds. “She looked like an unhealthy, starving baby,” said Clara’s mother, Lisa. The gastrointestinal (GI) specialists taking care of Clara knew that it was critical she receive more nutrients. As a long-term solution for Clara’s nutritional needs, doctors recommended a gastrostomy tube (G-tube).Once the G-tube was in place, Clara was finally receiving the nutrients her body needed and she began to grow, gaining eight pounds in seven months.
When Clara was 3 years old, Dr. Michael Peer, a pediatrician connected to The Hospital for Sick Children in Toronto, was concerned that Clara’s G-tube was too big for her small body and recommended switching Clara to the MIC-KEY* low-profile gastrostomy tube. The MIC-KEY* tube’s low profile enabled Clara to have a more active lifestyle and a better overall quality of life.
“As a parent, you always sort of wonder what the best option for your child is,” said Lisa. “But when you see the progress Clara made after starting to gain weight with her G-tube, she could finally be a normal baby. She could finally smile. Then, with her MIC-KEY* tube, her quality of life just rose exponentially.”
New Way of Life with MIC-KEY*
Today, the MIC-KEY* tube has become part of Clara’s daily routine. She is usually the first one up in the morning, immediately changing into her ballet clothes and heading downstairs. She has a morning feeding before practicing the piano and getting ready to go to school.
In September of 2013, Clara started attending school full time and is able to have a lunch feeding at school, with the help of a nurse. After school she participates in her in-home autism program then has dinner with her family. She is now able to use the MIC-KEY* tube to feed herself! Clara relies on the MIC-KEY* tube as her primary source of nutrition, but with the help of her mother and therapists, she has started to work on oral feeding.
Clara loves her MIC-KEY* tube, because it doesn’t interfere with her lifestyle. She is able to enjoy everyday activities like ballet classes and piano lessons.
“It’s easy to see a feeding tube as a scary situation, but the MIC-KEY* tube has made us think of it as a blessing,” said Lisa. “If we didn’t have this option available, I don’t know what we would have done. Without the MIC-KEY* tube, I don’t think Clara would have been able to thrive the way she has today. It has made all the difference in Clara’s quality of life and it was one of the best decisions we ever made.”