Alexis was unexpectedly diagnosed with childhood-onset heart disease (CoHD) shortly after she was born. What followed was a long journey involving three open-heart surgeries in just 14 days, a mechanical valve, a pacemaker and 99 nights in hospital.
Now 12, Alexis continues to amaze her family with her strength. Her mum, Hannah, shares their journey and the support HeartKids has provided along the way.
Can you tell us about Alexis’ heart journey?
Alexis was unexpectedly diagnosed after birth with an atrioventricular septal defect and mitral valve regurgitation.
At our routine two-week check, the midwife promptly sent us to our local hospital, where it was confirmed that Alexis was experiencing heart failure. From there, Alexis was transported to our nearest tertiary hospital, three hours away in Hobart.
Alexis spent three weeks at the Royal Hobart Hospital. During this time, she was reviewed by a visiting cardiologist from The Royal Children’s Hospital.
When Alexis was 10 weeks old, we flew to Melbourne for her planned surgery. The repair of her mitral valve was unsuccessful, and she had another surgery a week later to try again.
Alexis deteriorated further and underwent another surgery the following week to replace the valve with a mechanical one. That was three open-heart surgeries in 14 days.
Alexis recovered and grew after receiving the replacement valve, but her heart struggled to maintain a regular beat. Following a medical emergency team call and a sepsis scare, Alexis returned to theatre to have a pacemaker inserted.
After 99 nights at The Royal Children’s Hospital, Alexis was discharged.
Since then, Alexis has weaned from nasogastric tube feeding, been treated for endocarditis, undergone surgery to replace a lead on her pacemaker and had an additional surgery to replace the pacemaker’s batteries.
Alexis has grown a lot in 12 years, and her mechanical valve is now significantly too small for the size of her heart. We expect that it will need to be replaced again in the near future.
How has HeartKids supported your family?
HeartKids provided a familiar face each day throughout our hospital admissions and a sense of connection at weekly morning teas. We were also fortunate enough to access accommodation through HeartKids that was close to the hospital. This allowed us to spend time comfortably and privately with our toddler and extended family members who travelled from interstate to support us.
What do you wish more people understood about childhood heart conditions?
It is often an invisible condition and a lifelong journey without a quick fix.
The financial burden and emotional toll on the entire family can last long after the hospital admission ends.
What would you say to another heart family?
“When the present is too heavy to carry and the future is too blurry to see, there is hope, for in the darkest of shadows your child’s strength will unfold in ways that will leave you in awe.”
To support family’s like Alexis’, join your local Two Feet & A Heartbeat walk this October.
