In May 2019 our 9 month old daughter Ida was in heart failure. We had no idea. No one knew. Not even the paediatrician that checked her one month before. The fact was, she had been in heart failure since she was born.
When her heart was forming at around 8 weeks into my pregnancy, it missed the brief. It formed with a coarctation (narrow aorta), a bi cusped aortic valve (two leaflets instead of three) and a malformed mitral valve. She had a multiple defect on the left side of her heart – otherwise called Shone’s Complex. She also had Patent ductus arteriosus (PDA), an extra blood vessel found in babies before birth and just after birth. In most babies who have an otherwise normal heart, the PDA will shrink and close on its own in the first few days of life. In those that it stays open longer, it causes extra blood to flow to the lungs. Not ideal for our Ida.
Needless to say this news absolutely devastated our family. Our world was turned upside down or as my husband describes it – our cup, was tipped all over the floor. Our family has no history of heart conditions. My pregnancy had no concerns. We had heard the term “congenitive heart disease” but never thought twice about it.
When we found out about Ida’s condition we were flown by Life Flight from Dunedin directly to Starship Hospital in Auckland, where we spent two and a half months giving Ida a chance at life. Babies in heart failure generally don’t last more than 9 months in this state. She was 9 months old.
On day one in Starship we met Katya from Heart Kids. Little did we know that she would become a part of this journey too, and a pillar of strength through what was going to be a tough road.
In the beginning we held on to hope that all would be ok, and that an open heart surgery would “fix” her. Looking back now we really were so naive. There was always as with any surgery that it might not go as planned, but we never let our thoughts go down this hole.
Writing this now is hard. I stop at this point when I think about all that we have been through as a family. I stop because next to receiving her diagnosis, this is where the trauma really began. Sharing it is hard. Because it’s not nice. It does not have a fairytale ending. Congentitve heart disease is not found in the book of fairytales.
After Ida’s first bypass surgery, the coarctation and PDA were corrected successfully, and the surgeon was confident in the mitral valve repaired. And despite a collapsed lung post op, she was back to her normal self within two weeks. But then something was just not right. She was pale. Very pale. An urgent set of bloods were requested. And the results shattered our hope.
Ida was haemolysing. Her red blood cells rupturing. She needed an urgent blood transfusion. And subsequently, multiple blood transfusions as we then awaited what we hoped would not be needed. A mechanical mitral valve replacement and another open heart surgery. Once again, our cup had been tipped all over the floor.
Three weeks later, her valve arrived. One of the smallest mechanical mitral valves in the country to be fitted into someone of her size. So five weeks after the first OHS we had to send her back in to the OT and back onto the bypass machine.
Ida came through her second surgery better than the first. Within 5 days she was demanding food and giving the Ward 23b nurses the finger (pointing that is). And while the pathway ahead for Ida is now much harder than we had originally hoped, seeing her so well restores that hope.
Ida faces multiple surgeries in her lifetime and will be somewhat shackled by the risks that come with taking an anticoagulant medication (Warfarin) for the rest of her life. But she is simply unstoppable. A fighter with more heart than most. A little girl that teaches us about strength and resilience daily. And above all, she is with us. Her future is bright and we will never hold her back.
HeartKids held our hand through all of this. From the bedside visits, to the supermarket vouchers. To the meals in the fridge that kept us going when facing the outside world just couldn’t be done, to the hallway conversations that gave us strength to make it through another day.
We had no idea that Heart Kids existed. This in itself is a tragedy. They receive no government funding yet have supported us more than any local MP. To raise awareness about this charity and to give back after they gave so much to our family is why I have run both the Auckland and Queenstown marathons, raising more than $10,000 for them.