Isaiah’s CHD Story

isaiah-in-hospitalIsaiah’s Congenital Heart Disease journey began like most heart child stories I have read, at the 20 week ultrasound. After two relatively “normal” pregnancies my wife Helena and I went in for what we thought would be a routine ultrasound at the Latrobe Regional Hospital. While Helena undertook the procedure I was entertaining our two older children Xavier (aged 5) and Emmerson (aged 3) in the hospital’s playground. I can still vividly recall Helena coming out and stating “There is something wrong”.

We both went down to the Monash Medical Centre where our baby was diagnosed with a complex congenital heart condition. The doctors explained our options to us and to our shock, termination was presented as a viable choice. Without any hesitation we both knew we would proceed with the pregnancy and were confident that, with the support of our family and the strength of our relationship, we could handle any outcome, either good or bad. Speaking with cardiologist Professor Sam Menahem after the initial diagnosis filled us with hope that there could be a positive outcome.

Helena was scheduled for an induction at Monash Medical Centre Clayton at around 38 weeks and on the 3 January 2007, Isaiah John Taylor was born. He was in such a hurry to come into the world that I missed the actual birth after heading out briefly for some lunch!  At around 3kg birth weight he looked massive amongst the mostly premature babies in the NICU.

isaiah-with-family-in-hospitalIsaiah was born with a complexity of conditions including hypoplastic right heart syndrome, transposition of the great vessels, ventricular septal defect (VSD) and double inlet left ventricle (DILV) and much to our relief he did not require immediate surgery. His first operation was at three months of age in April 2007 when the first stage of the Fontan, the shunt banding, was completed. Complications from bleeding around his heart saw him rushed (his first plane trip) back from our home in the Latrobe Valley to Monash a few weeks later for follow up surgery.

Regular check-ups with Sam followed over the ensuing years and Isaiah finally had the Fontan operation aged 5½ on  29 August 2012 at The Royal Children’s Hospital. What a marvellous job the cardiac surgeons and staff do at the RCH. Amazingly we were home by 10 September (after just 12 days) and the only real issue since that time was a brief overnight stay in September 2013 to remove a bulging chest staple.

isaiah-playing-sportWith all the extra energy Isaiah now has, he can comfortably ride his bike, enjoy going to the beach and the swimming pool, play basketball and he even won his first football grand final playing for the Trafalgar U10’s last year. Just to run out on the football field was a massive achievement we never envisaged would eventuate.

Like any other 9-year old Isaiah seems to have boundless energy at times. Other than the occasional check-up, his daily blood thinning medication and the odd night when he complains his legs are sore (normally after a very active day) and some “off” days where he feels lethargic, life is pretty normal.

One thing we have learned from this experience thus far is to take each day as it comes and enjoy the simpler things in life.

Paul Taylor

Victoria & Tasmania