Navigating Milo's heart journey through care, community and unlikely date nights

During her pregnancy, Kori was closely followed by teams at Mount Sinai Hospital and SickKids and a plan was put in place to bring Milo – or Mighty Milo as he’s better known – to SickKids right after his birth via the underground tunnels that connect the major hospitals along Hospital Row. The clinical team at SickKids’ Cardiac Critical Care Unit (CCCU) was ready to attend to Milo’s care needs when he arrived in late November.

“We only have the best things to say about our health team. The nurses and whole department are a little community. Everyone says hello to Milo, asks how he’s doing, and we feel the love for all their patients,” says Kori.

Milo’s rare congenital condition, a very complex version of Transposition of the Great Arteries (TGA), occurs when the two main blood vessels leaving the heart are in the wrong positions. In his first month of life, Milo had two procedures to help stabilize him and to get him strong enough to go home. But after only two weeks at home in London, Ont., another issue re-emerged – necrotizing enterocolitis (NEC) – a serious gastrointestinal issue requiring surgery and another lengthy stay at SickKids. 

Despite all of these challenges, the Axford family finds ways to bring routine, celebration and positive memories into their lives, through SickKids’ Child and Family-Centred Care approach and programs organized through a variety of teams, including Child Life and Creative Arts Therapy. 

Milo and his family have participated in activities, such as circle time with music therapists, story time at the Family Centre, visits from the Toronto Maple Leafs and Raptors, art therapy in their room, all of which help to make memories. “Milo is mesmerized by the therapeutic clowns’ colourful costumes, and at music therapy sessions it’s beautiful to see him focus and listen to the soothing sounds. He even recently started smiling and cooing at us!” Kori adds. 

In addition to memories made as a family, there are opportunities for caregivers to reconnect and carve out time for themselves through Parent and Caregiver Wellness activities at SickKids.

“We try to create positive memories for families and spaces for them to gather, bond and connect outside their rooms,” says Laura McGrath, Child Life Specialist at SickKids. “Many families are surprised to hear these events are offered and are so appreciative of the opportunities and do things that they would typically do at home.” 

A hospital may not seem like the most romantic place, but when it’s the only place to go on a date night, you take advantage of it! This Valentine’s Day, Kori and Taylor are taking some well-deserved respite time to attend a movie date night at the Daniels Hollywood Theatre in the hospital (no kids allowed!), after taking professional photos with a lovely Valentine’s Day backdrop, open to all patients, families and staff. 

“Caregiver activities help Taylor and me to fill our cups too. I remember a Child Life Specialist once told me that you can't pour from an empty cup and that really stuck with me,” Kori says. “It's okay for us to step away and do things together, especially because we know Milo is in excellent hands with his health-care team. We can always feel their love for our Milo and they treat him like one of their own.” 

Kori and Taylor hope Milo, now almost three months old, will be able to spend time at home before his planned open-heart surgery at SickKids in a few months. Even at home, Mighty Milo will continue to be closely followed by this close-knit community – his SickKids health-care team.