A return to family life (Stephano Ruvo)
“They treated us like one of their own,” says father of baby who spent year at The Montreal Children’s Hospital
Stefano spending some quality time with his mother, Rosa.
Most parents take their newborns home a day or two after birth. Stefano Ruvo’s parents had to wait a year to bring their young son home for good. Admitted to The Montreal Children’s Hospital (MCH) just before Christmas, 2009, Stefano could not breathe without mechanical assistance. “He was attached to a machine right after birth to help him breathe,” says Dr. Guilherme Sant’Anna, MCH Neonatal Specialist. “We tried to wean him off the ventilator but he was not capable of breathing by himself. We suspected a genetic disease associated with respiration.”
Several weeks later, tests confirmed the diagnosis. Stefano had been born with Congenital Central Hypoventilation Syndrome (CCHS), a rare genetic disorder of the central nervous system which disrupts the body’s ability to control breathing.
“In effect, because of the CCHS, his brain is not ‘telling him’ when to breathe,” says Dr. Sant’ Anna. “Stefano has moderate-to-severe form of the disorder, so he needs ventilator support almost all the time.”
CCHS is also associated with a disorder of the GI tract which prevents food from moving normally through the body. To remedy this, doctors had to remove a long segment of Stefano’s intestine. “This left him with what we call a ‘short gut,” says Dr. Thérèse Perreault, head of the MCH Neonatology Department. “As a result, his body is not able to absorb all the nutrients in food, so he needs intravenous feeding.”
In addition to the operation on his GI tract, Stefano received a tracheotomy to allow him to use a ventilator long-term. Despite all these procedures and several bouts of infection, the baby boy made steady progress.
Hospital became a second home
“During the year Stefano was at the MCH, it became our home,” says Vito Ruvo, Stefano’s father. “We have nothing but loving words for all nurses on 9C. They treated us like one of their own, and the way they cared for Stefano was exceptional. The training they gave us made us confident we could take care of him when he did come home.”
In January 2011, Stefano was discharged for good. “Organizing his discharge was more than an ordinary challenge, because he needed both ventilator support and IV feeding,” explains Dr. Perreault. “Most kids who go home with special support might need one of these two things, not both. We had to find funding for special support – and we did.”
At home, Stefano is thriving. “He’s an absolute terror,” says Ruvo. “ He walks, he runs around, he climbs couches. We can take him off his respirator for short periods two or three times a day, and he really makes the most of his freedom. Our five-year-old twin daughters are well trained. If a tube falls out they know what to do. It’s been a great 10 months – we are living a normal family life, and it’s all thanks to the people at the MCH. They have given us our life back.”