On 1 December 2002 I had little exposure to heart disease however only 10 days later was at the Pediatric Intensive Care Unit (PICU) bedside of our newborn baby who required lifesaving open heart surgery.
Whilst many diseases are extremely well known, the following are little known facts:
• Heart defects are present in 1 in 100 babies
• Heart disease in children is the leading cause of childhood death in Australia accounting for 30% of all child deaths.
• Nearly twice as many children die of congenital heart disease compared to all childhood cancers
• In 80% of cases the cause is largely unknown.
The amazing thing is how far medicine and surgery has progressed to allow a second chance for many babies like ours that only 20 years ago would not have survived.
Whilst there is a myriad of different abnormalities that can occur, our newborn baby required reconstruction for a coarctation of the aortic arch, reconstruction of both the aortic and mitral valves and closing of a Ventricular Septal Defect (VSD).
The mitral and aortic valves were narrow and the anatomy of the valves was somewhat different to what they should have been. Whilst the aortic valve reconstruction was quite successful, the mitral valve is far more complex and following surgery the gradient across the valve was still high thus leaving our baby with mitral valve stenosis (narrowing of the valve).
This particular surgery took 5.5 hours and the stakes were high – a one in ten or 10% chance that our son would not survive.
Following surgery the next 24 hours is seen as a vital period where if problems are going to be encountered, this is likely to be the period. This is not to say that post 24 hours means everything is fine and dandy. Recovery in our case was slow with a further ten days in the Pediatric Intensive Care Unit for weaning off the ventilator which assists and at times initiates breathing, as well as waiting for the heart to ‘settle’ so that pacemakers and other medications are no longer necessary.
Much of the recovery period is “trial and error” or more like careful monitoring and adjustment as necessary. For example following heart surgery patients are fluid restricted to assist the work the heart has to do thus attempting to prevent the build up of fluids leading to heart failure. On the other side of this coin however is that a patient can then end up dehydrated.
It is hard to know whether advance knowledge of a heart condition in an unborn baby would be better than the shock we experienced with diagnosis two days after the birth of our child. Either way it is an enormously stressful process that in our case did not and has not ended with the surgery following birth. In many instances further surgery is required, for us another reconstruction of the mitral valve at two years of age and further surgery is expected with ultimate replacement of the mitral valve with an artificial valve.
The unknown throughout our process and in many cases is when the next surgery will be required. For these cases, 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.
For all those in a similar situation our thoughts and prayers go out to you. For anyone interested, the amazing story in relation to the ongoing saga with our son can be found at http://www.beatinghearts4kids.blogspot.com .