Ava was initially diagnosed with a congenital heart condition that appeared mild at five months gestation. However, as we approached her delivery date, advanced imaging revealed a more complex condition that required specialized care.

It wasn’t until her care was transferred to Dr. Lindsay Freud, Head of Fetal Cardiology at The Hospital for Sick Children (SickKids), that she received an accurate diagnosis: a rare congenital heart defect known as Ebstein’s anomaly—a condition where the tricuspid valve is abnormally formed and displaced from its normal position.

In Ava’s case, the displacement was severe. Fortunately, the incredible team at SickKids quickly implemented a comprehensive care plan. Since birth, Ava has been closely monitored by Dr. Freud and her cardiology team at SickKids. As part of that plan, it was recommended that she undergo the cone procedure—a highly specialized repair of the tricuspid valve that is only available at select hospitals-this summer.  After a number of pre-operative meetings and consultations with the team at SickKids, Ava went under the knife to fix her heart. Dr. Osami Honjo, to whom we will be eternally grateful, was able to perform the cone procedure successfully and repair Ava’s Tricuspid Valve.

Even though the cone repair was a success, there were some issues post-operatively for Ava. It took her some time to get on her feet, and regain her strength; however, she ended up back in the hospital, first, with a partially collapsed lung. Then a more serious issue arose in the form of an arrhythmia/atrial flutter for which she still receives care and is overseen. We learned that these complications, along with other aspects like the full functioning of the right ventricle, are not uncommon in Ebsteins patients. Furthermore, there is a need for additional research to better understand why these issues arise and their long-term impact. The cone procedure itself is relatively new with application for younger patients also much more recent. The need for additional studies, like the one being undertaken by Dr. Freud, is clear.

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Today, Ava is a lively three-and-a-half-year-old who loves dancing, singing, and playing dress-up with her older sister. She has come back strong and is ready to take on the world!

The are not enough words in the English language to appropriately convey our thanks to everyone at this wonderful hospital; however, while the care at SickKids has been extraordinary, Ebstein’s anomaly remains an extremely rare condition with many unknowns. This uncertainty makes the journey terrifying for families like ours. The lack of available research means there are no guaranteed outcomes—only questions, and hope. 

To help change that, Dr. Freud and her team are leading the Fetal Ebstein Anomaly and Tricuspid Valve Dysplasia (FEAT) Study, an international research initiative that follows patients diagnosed in utero with Ebstein’s anomaly or tricuspid valve dysplasia. This study aims to track these children throughout their lives to better understand how to care for them and improve long-term outcomes. Learn more about the study here. 

To support this critical research, we’ve launched Heart in the Game—a community-driven fundraising initiative inspired by Ava and so many other children living with complex congenital heart conditions. Our goal is to raise awareness and funds for the FEAT Study and other vital cardiac research at SickKids.

Whether you’re an individual looking to give or a business seeking to make a meaningful impact, your support can make a difference. For corporate sponsorships or partnership opportunities, please reach out to us at info@heartinthegame.ca or visit heartinthegame.ca. 

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To make a donation directly, click "DONATE" and help us put more heart in the game—for Ava, and for all the kids who deserve a fighting chance at www.heartinthegame.ca.