I never thought that I would have to deal with heart disease until the day our newborn baby was born. Just 10 days after his birth, we found ourselves in the Pediatric Intensive Care Unit (PICU), praying for his survival during open heart surgery.
Heart defects may not be as widely known as some other diseases, but they are present in 1 in 100 babies. Shockingly, heart disease is the leading cause of childhood death in Australia, accounting for 30% of all child deaths. Moreover, nearly twice as many children die from congenital heart disease as from all childhood cancers combined. The cause of this disease is still largely unknown in 80% of cases.
Fortunately, medical and surgical advances have come a long way, offering a second chance to many babies like ours, who would not have survived 20 years ago.
There are various types of heart abnormalities that can occur, and our newborn baby required reconstruction for a coarctation of the aortic arch, reconstruction of both the aortic and mitral valves, and the closing of a Ventricular Septal Defect (VSD). The mitral and aortic valves were narrow, and their anatomy was different from what they should have been. The aortic valve reconstruction was relatively successful, but the mitral valve proved to be far more complex. Even after surgery, the gradient across the valve was still high, resulting in our baby’s mitral valve stenosis (narrowing of the valve).
This specific surgery took 5.5 hours, and we were aware of the stakes – a one in ten or 10% chance that our son would not survive.
The first 24 hours after surgery is a crucial period where problems are most likely to occur. However, it doesn’t mean that post-24 hours everything is fine and dandy. In our case, the recovery was slow, and our baby spent another ten days in the PICU. We had to wean him off the ventilator, which assisted and initiated breathing, and wait for his heart to settle so that pacemakers and other medications were no longer necessary.
Recovery after open heart surgery is primarily a “trial and error” process or, rather, careful monitoring and adjustment as necessary. For instance, patients are fluid-restricted after heart surgery to prevent fluid build-up, leading to heart failure. On the flip side, patients can end up dehydrated, leading to other problems.
It’s hard to say whether having advance knowledge of a heart condition in an unborn baby would be better than finding out after the birth of a child. Either way, it’s an enormously stressful process that does not end with the surgery following birth. In many cases, further surgery is required, as it was for us, another reconstruction of the mitral valve at two years of age. Ultimately, replacement of the mitral valve with an artificial valve is expected.
The unknown throughout our process and in many cases is when the next surgery will be required. Families of babies, toddlers, and children go from day to day, week to week, month to month, and sometimes year to year before the next call to surgery comes.
Despite the challenges, we have learned to cherish every moment and to be thankful for every day. We have seen how medicine and surgery have come a long way, and we believe that the future holds even more promise. We hope that one day, congenital heart disease will be a thing of the past. Until then, we will continue to fight for our baby’s health, and we hope that other families will do the same.
