Charlie’s Story

For the first four months of Charlize (Charlie) Lefave’s life, SickKids was the only home she knew.

Eighteen weeks before Charlie and her identical twin Georgia were born, their parents, Karen and Greg, learned that the girls were at very high risk for complications. Charlie and her sister were diagnosed as Mono-Mono or MoMo twins. In this rare condition, identical twins share the same amniotic sac within their mother’s uterus, and their umbilical cords can get tangled or compressed.

Karen’s pregnancy was carefully monitored, as Charlie was diagnosed with a heart condition while still in utero. She became a SickKids patient before birth and Karen was seen in the SickKids Fetal Cardiac Program. Approximately 60 per cent of newborns in Ontario with a major cardiac malformation requiring treatment at birth are diagnosed and followed by the program at SickKids.

In mid-April 2014, Karen and Greg moved to Toronto from their home in Sault Ste. Marie so the remainder of Karen’s pregnancy could be closely watched. A little more than a month later, on May 25, Charlie and Georgia were born prematurely at just 31 weeks’ gestation. Charlie was immediately rushed to SickKids.

At two months old, Charlie weighed only five and a half pounds and was too small for the complicated heart surgery she needed. But it wasn’t too early for the SickKids team to prepare to help her. While doctors waited for her to grow, a 3D model of Charlie’s heart was printed so her team could study the defect before performing surgery. SickKids has pioneered a number of techniques for imaging hearts and printing 3D models.

A few months later, in early August 2014, Charlie had her first open-heart surgery. She spent two weeks recovering in the Intensive Care Unit (ICU) before getting her own room, where her mother Karen and twin sister Georgia joined her. Karen and the girls spent their final three weeks in Toronto living at SickKids, with father Greg visiting every weekend, then returning to Sault Ste. Marie to work during the week. Greg made one final trip in mid-September 2014 to bring his family home for the first time. Charlie spent the next few months in Sault Ste. Marie growing and getting stronger for another operation this past spring.

Charlie is monitored every six months at SickKids. And when the Lefaves come to the hospital, they always visit the staff who were their support system while they were living far from home.