Proud parents Rosa and Vito Ruvo welcome their baby boy Stefano Vito Ruvo on December 1, 2009, but nothing could have prepared them for what was to come. Doctors saw that Stefano was unable to breathe on his own, and they diagnosed him with Congenital Central Hypoventilation Syndrome (CCHS), a condition where his brain forgets to remind his lungs to breathe. Stefano would therefore need a tracheotomy and a respirator to help him breathe.
And it wasn’t over yet. Stefano was also diagnosed with an associated condition, Hirschsprung’s disease, so doctors had to remove his large intestine and part of his small intestine. Stefano then had an ileostomy, which connects his small intestine to an opening in the skin.
With twin girls, Maria and Victoria, at home, Vito and Rosa had their work cut out for them. For the first year of Stefano’s life, he had to live in the hospital with round the clock care. After that long year, however, his parents were anxious to take him home. His parents petitioned to allow them to care for him at home. The doctors trained Rosa and Vito on the extensive care their son would need. They had trial runs, where they were given a room in the hospital for a weekend and they would pretend they were home. Everything went smoothly, so Stefano was allowed to go home, provided that they had a nurse care for him at night while his parents slept.
Last year, Stefano had a surgery where they placed diaphragm pacers under his skin to stimulate his diaphragm, allowing him to breathe without a respirator. This technology allows him to have a better quality of life during the day. At night, he still needs to be connected to the respirator, but during the day, all he needs is a small backpack that holds the external transmitter that sends radiowaves to the electrodes (the pacers), causing his diaphragm to contract, and he’s good to go. Because of this surgery, Stefano can attend school with a nurse. He goes to a pre-kindergarten now and was just accepted into kindergarten next year.
When asked how they’ve adapted to the huge change in their lives, Vito says that “It was something that was dealt to us, so we played with it, we went with it, and we moved forward. Five years later and it’s a normal part of our lives. We don’t even think about it. It just has to be done.” One of the things they miss is the ability to travel or leave the house spontaneously. Rosa says “It’s hard sometimes because you can’t just pick up and go. Everything has to be anticipated: shopping, groceries; we need at least 15 minutes to prepare him.” It’s all worth it though, because boy is Stefano something else!
At five years old, you’d be amazed to see the boy he’s become. You would expect a frail boy that everyone is afraid to touch, but he’s quite the contrary. Stefano is vibrant, spunky, and hilarious. We had the chance to meet him and we quickly fell in love. According to his sisters, he has many girlfriends (whom he was quick to point out in class photos), and his classmates are all very understanding of his condition. He has no problems at school with the other kids and has made many friends.
Like a true Montrealer, Stefano loves the Habs, his favourite players being P.K. Subban and Carey Price. He plays soccer and floor hockey with his sisters and friends and pretty much does what every other kid does for fun. He lives a full and active life, all thanks to the care he got from his parents and the Montreal Children’s Hospital Complex Care Services.
That’s where the SVR Children’s Foundation comes in. Stefano’s cousin, Jennifer Ruvo, decided to raise money for the department that helped him. She began her fundraising efforts in 2012 and has since raised over $43,000. This year, Montreall.com is partnering up with the SVR Children’s Foundation and blogger Tanya-Kay to throw the Cocktails and Couture for a Cause charity gala on May 13th. All proceeds go to the SVR Children’s Foundation. To read more about the event, click here. To buy tickets, click here. If you can’t make it to the event but would like to help the cause, you can make a donation here.
Join us in helping other families like Stefano’s get the complex care they need. Even though their lives are challenging, they are not without their rewards. As Stefano’s sisters said, “It’s a crazy fun house in here!”
Photos: Montreall.com photog Ver Sepasi (@versepasi)