Nolan Roseneck is a typical three-year-old boy. He is obsessed with cars and has energy to burn. He also loves to hear the story of how his ‘broken heart’ was fixed at CHEO. His parents, Jenn and Adam, welcomed their baby boy on January 31, 2017, in New Liskeard – a six-hour drive from their hometown of Ottawa.
When Nolan was just days old doctors heard a heart murmur. Further investigation revealed he had Tetralogy of Fallot (TOF), a congenital heart defect made up of four abnormalities that result in a baby’s blood not carrying enough oxygen. These babies can suffer “Tet Spells,” where they turn blue and can lose consciousness. Jenn and Adam were told that they couldn’t let Nolan cry – at all – to avoid these spells. Open heart surgery was the only option.
Jenn and Adam opted for Nolan to be treated at CHEO where they had family to support them. “It was amazing for us to be able to have the world-class care we knew CHEO could provide to Nolan, and have our family’s support as well,” Jenn says. “I don’t think we could have made it through all of it without both!”
When Nolan was three months old, Dr. Gyaandeo Maharajh performed surgery. Nolan came through the procedure with flying colours and his family thought the worst was over. But five days after returning home to New Liskeard, Nolan’s breathing seemed strained. A trip to the local hospital resulted in Jenn and Adam being told their baby needed an airlift to CHEO. Bad weather changed the plan and Jenn had to climb into an ambulance in the middle of the night with Nolan in a neonatal transport isolette to make the trip by road instead.
Nolan had fluid in his lung and needed to be closely monitored. He was discharged, but the family was staying at Rotel, next door to CHEO, to be nearby. As they settled in, Nolan was crying, and Carolyn was trying to comfort him.
What followed was a horrible, harrowing time for the entire family.
“He was crying,” his grandmother Carolyn recalls. “Then he just…stopped. His breathing became shallow and his eyes rolled back. He turned blue and went limp. I can’t even describe it. I thought he was going to die in my arms,” she says, her voice cracking. “We called 9-1-1 and he was rushed back to CHEO. They got to him just in time.”
A staph infection was ravaging Nolan’s system. He hadn’t exhibited traditional symptoms, and it spread through his tiny body within a few hours. Jenn watched as the medical team manually ventilated Nolan and hooked him up to an IV. He had to undergo another surgery to insert a drainage tube into his lung and manually clear out the infection. Within 24 hours Nolan had gone from being irritable to relying on life support in the Pediatric Intensive Care Unit (PICU) to survive. He would spend two weeks in CHEO’s PICU and another eight weeks on a course of IV antibiotics to beat the infection.
Once on the road to recovery, Nolan continued to thrive. The sturdy little man he is today makes him living proof of everything CHEO has to offer: state-of-the-art equipment, cutting-edge research and world-class care.
Nolan welcomed a little sister last year. Claire adores him and he is a very proud and sweet big brother to her. During a recent visit to CHEO for his second annual check up, Nolan got a glowing report from his cardiologist. He also had an impromptu reunion with Dr. Maharajh. “We saw him in the hallway of the clinic,” Jenn laughs. “He was instantly elated and ran over to him and asked, ‘Dr. Maharajh, you fixed my heart?’”
They chatted for another few minutes about cars, of course, posed for a photo and Nolan moved on – just as Dr. Maharajh and the team had intended.