This October, Henry and his family will be part of HeartKids’ Two Feet & A Heartbeat campaign. By sharing their story, they hope to help more people understand the lifelong impact of childhood-onset heart disease (CoHD) and remind other heart families that they are not alone.
Henry was diagnosed with Tetralogy of Fallot several days after he was born and underwent open-heart surgery at six months old. His mum, Leanne, shares the challenges of his recovery, the support their family received and the happy, stubborn and cheeky seven-year-old Henry is today.
Can you tell us about Henry’s heart journey?
Henry’s diagnosis was unexpected and came several days after his birth. Henry was diagnosed with Tetralogy of Fallot, which involves four abnormalities, including a ventricular septal defect (VSD), pulmonary stenosis, an overriding aorta and right ventricular hypertrophy. In addition, Henry also had an atrial septal defect (ASD) and patent ductus arteriosus (PDA).
Henry underwent corrective open-heart surgery when he was six months old. Surgery was completed successfully, but recovery then became a fight to survive.
Henry encountered complication after complication, including arrhythmias, pericardial effusion, acute kidney injury, aspiration pneumonia, a blood transfusion and reaction, and he could not be extubated. He remained on life support for nearly a month, with almost all treatment options exhausted, the last being a tracheostomy.
He fought incredibly hard and, with the support of HeartKids, an incredible medical team, a surgeon who never lost faith and his family, the fifth attempt at removing life support was successful and we continued on our journey of recovery.
Almost seven years on, his heart is healthy and strong, and he is a happy, stubborn and cheeky boy!
How has HeartKids supported your family?
We could not have made it through Henry’s first year of life without the support of HeartKids, whether it was an ear to listen, a shoulder to cry on, the connection to families that understood what we were going through, or just that friendly face that passed us in the hospital corridor and asked, “Are you doing ok?” or “What can we do for you?”
We have made lifelong friendships and will be eternally grateful. HeartKids will be a part of our lives for the rest of our lives.
What do you wish more people understood about childhood heart conditions?
The journey does not end after surgery has been performed and you have left the hospital. CoHD is a lifelong diagnosis and requires lifelong management.
No matter how stable and healthy your child is, there is always a “what if”, and at every cardiology check-up, you run through the motions and hope for another year of being ‘stable and healthy’.
What would you say to another heart family?
When we were faced with the very real possibility that Henry might not make it home, a very wise and wonderful cardiothoracic surgeon gave us this advice:
“Having a child with a heart condition is truly a rollercoaster ride, especially after surgery. There are great highs and there are great lows, the trick is learning not to pop the champagne during the highs and not to walk yourself to the edge of the cliff during the lows – hold on and remember to take care of yourself, because you will reach the end, and you will be able to get off”.
