Matt Munro

A week before Matthew made his way into the world in May 1996, we realised there was something wrong with his heart. We were referred to Middlemore Hospital, where the registrar was amazed by Matthew’s chaotic heart rhythm. The following evening he was induced and born after an eventful but short labour.

At one point during the labour, his heart dropped suddenly, sending hospital staff running from all directions. From that point on, he was monitored even more closely, but fortunately, 20 minutes before his mother’s birthday and Mothers Day, he was born without further complications.

Despite the issues going on in his heart, his colour and demeanour were deceptive: pink skin, happy nature, and a good weight of 3,150g. But the heart rhythm was still chaotic. Within a couple of hours of his birth, the attending doctors tried to – as they put it at the time – jump-start his heart. They used Adenosine to stop his heart, and then Digoxin to restart it. Their hope was that it would restart with a normal healthy rhythm, but it didn’t make any difference. We were beginning to realise our wee baby might have serious issues... After a week’s testing and close observation in Middlemore’s Special Care Baby Unit, we were finally discharged when Matthew was 8 days old.

When we arrived a week later at Greenlane outpatients, Dr Neutze told us that Matt’s heart was beating at 60 beats per minute – half the normal rate. We were immediately admitted to Greenlane’s Ward 9. Another eight days later, we were discharged with the diagnosis that Matthew had Sick Sinus Syndrome, a collection of symptoms resulting from “right bundle branch block”, and he would be in the Greenlane system from now on, needing regular checks.

Before long we were put in the care of Dr Jon Skinner. We continued to have regular visits and Matthew grew and thrived like other children of the same age. However at 18 months we started to notice he would stand still for periods of time, as if to catch his breath – not usual toddler behaviour!

We raised the issue at his next check up. He was fitted with a Holter monitor to record his heart activity over a 24 hour period. Just before Christmas 1998, Jon Skinner rang us. The Holter had recorded Matthew’s heart pausing for dangerously long periods at night: up to six seconds at a time! Jon told us he needed to have a pacemaker implanted.

On New Year’s Eve, at age 2½, Matthew received his first pacemaker without complications – an atrial pacemaker implanted in his left shoulder, with a single wire passing through a vein to the inside of his heart. We discovered he had an underlying heart rate of less than 30 beats per minute! The pacemaker rapidly became essential to his survival.

The next few years Matthew seemed well. Our regular checks were always nightmarish. Matthew became anxious and resistant to any testing of any sort. Thankfully this eased a bit after he started school. He continued to grow and meet all his milestones.

However in November 2004, Matthew experienced dizziness and headaches after exercise at school. Another Holter monitor report revealed a concerning episode of VT (ventricular tachycardia). We were admitted for an EPS (ElectroPhysiology Study), a procedure which Jon Skinner describes as “sending some wires in through his groin to tickle his heart”. The EPS was inconclusive, but Matt’s condition had clearly deteriorated.

The decision was made to replace his pacemaker with a dual chamber model which would control the activity in his ventricles, as well as his atria. In August 2005, his first pacemaker was removed from his shoulder and replaced by a new one in the left side of his stomach cavity. Things were a little hairy for a short while post operatively, but after the first 24 hours he stabilised and made a great recovery.

The new pacemaker came part and parcel with his first on-going daily medication: the beta blocker Nadolol, to control any episodes of VT. In effect the pacemaker was preventing his beating too slowly and the Nadalol was preventing his heart beating too fast.

Emotionally, he took a while to adjust. The pacemaker is much more prominent and prone to knocks. Kids at school could be a little grossed out. He is dealing with all this, but finds it hard at times.

Despite that, his condition and pacemaker don’t stop Matt being as active as any other boy his age: he loves his soccer, showing particular skills as a goalkeeper. Possibly even more passionate for him is his love of cricket: he’s an effective quick bowler, and has taught himself to bat left handed, to keep the pacemaker on the back-side of his stomach away from the on-coming ball from the bowler. He also wears a foam pad (an elbow guard) over his pacemaker when he bats. Currently he is captaining his Year 7/8 team.

In addition to sports, he is an enthusiastic communicator, showing a great deal of talent in his speech and drama classes, and is comfortable with public speaking, often being called on by @Heart to speak about his condition and his life at their fundraising events.

Since the operation, he has undergone genetic testing and a modified diagnosis has been made: Progressive Cardiac Conduction Disorder. It appears he has a genetic mutation which explains the progress of this uncommon condition.

Two years ago, the Nadalol was replaced with different beta blocker, Metoprolol.

We cannot be sure what the future will hold – though Matt is convinced his next pacemaker replacement will be next year (2010), as he enters first year of secondary school!

However we are grateful for the wonderful care we continue to receive from Dr Skinner and the large number of staff we see regularly at Starship Hospital. We are also thankful for Matthew’s overall good health and confident that he will benefit from any new developments in scientific knowledge in this area.

Tracy & Alistair Munro – May 2009