A long journey home: Stefano’s big victory
Appearances can be deceiving. The first year of a child’s life is without a doubt a period of great vulnerability. However, as you will read in the following story, newborns can also show incredible resilience, sometimes even against all odds.
Born on December 1, 2009, Stefano Ruvo was transferred to The Children’s at three days of age when doctors saw that he couldn’t breathe on his own. After undergoing extensive tests, Stefano was diagnosed with Congenital Central Hypoventilation Syndrome (CCHS), a rare condition of the central nervous system.
Doctors explained to parents Rosa and Vito Ruvo that, since Stefano’s brain was not stimulating his lungs, a respirator would be needed to keep him alive. He would therefore require a tracheotomy. To make matters worse, further tests showed that Stefano also suffered from Hirschsprung’s disease, a condition often associated with CCHS, which prevented Stefano’s large intestine from functioning.
On December 28, Dr. Sherif Emil performed a surgery to remove baby Stefano’s large intestine and part of his small intestine. As a result, Stefano now had an ileostomy - the end of his small intestine was connected to an opening on the surface of his skin. Two weeks later, the tracheotomy was performed.
One can only imagine how Rosa and Vito, who were also looking after their young twin daughters, managed to cope throughout such an emotional roller coaster ride. “As a mother, it is painful just to think of leaving an infant in the hands of strangers,” says Rosa, “but we had absolute confidence in the medical and nursing staff. Stefano was given so much attention I knew I could leave him when I needed to care for my girls.”
With the two major operations complete, Stefano then began the long uphill battle of rehabilitation. “For months he remained in the Intensive Care Unit with little progress. Then one day we saw him smile for the first time,” recalls Vito. “It was so encouraging and we knew it was a sign that Stefano was not giving up.” Over the next several months, occupational therapists helped him reach milestones. Stefano responded well and began making progress by leaps and bounds, giving his parents hope that they could eventually bring him home.
In December of 2010, after spending the first year of his life in acute care, Stefano was granted a day pass out of the Hospital. More passes followed and slowly but surely Stefano made the transition to living at home. A remarkable feat as one of Stefano’s physicians, Dr. Hema Patel, explains: “Stefano’s unique needs required the equivalent of an intensive care unit in his home. Teamwork was the key to making this possible - teamwork not only among all the specialists caring for Stefano at The Children’s but most importantly with the boy’s parents, who learned to provide technologically advanced care to their child.”
“The staff at The Children’s really gave us the skills and confidence to care for Stefano,” explains Rosa. “It is such a joy to see him thriving, and experiencing life at home, with his family.”