Jack’s Story

Written by Jack’s Mum, Cathie.

After a very normal pregnancy Jack was induced into the world on Friday September 30th, 2005. His birth was very similar to that of his big sister Lara, only quicker. And just like Lara after a short while he was placed in a humidicrib due to some initial breathing trouble. We had only intended to have 2 children and we were blessed to now have a girl and a boy and I remember saying over and over to my husband, Matt, “I can’t believe it’s over, I can’t believe it’s over,” (I was quite happy that I would not have to go through birth again). How wrong I was. As we were about to learn, everything had only just begun. That evening we were transferred to the Women’s and Children’s Hospital and told in no uncertain terms that Jack was born with a complex Congenital Heart Disorder and that the doctors could not give us any guarantees that he would survive. Jack had an ASD, a complex series of VSD’s, Pulmonary Atresia and Double Outlet Right Ventricle.

How could this be? Everything was fine during pregnancy! How can this be happening, TO US? Childhood Heart Disease (CHD)? We had never even heard of it.

Jack was in ICU through the weekend and was then flown by the Royal Flying Doctor Service, accompanied by a nurse and a doctor, to Melbourne’s Royal Children’s Hospital. We followed on a commercial flight and at 4 days old Jack underwent his first surgery where a BT Shunt was inserted. We spent 2 weeks in RCH and, due to complications with fluid around his lungs, spent another 4 weeks in WCH back in Adelaide. Finally we were allowed to take our beautiful boy home on November 15th.

We were told that the shunt would see Jack through until he was about 1 year of age when more surgery would be planned to fix the complex set of problems that Jack had with his heart. However on Christmas Eve, Jack was not well so we took him to Emergency at WCH, “just to be sure”. Only a few hours later we found ourselves back on the CHD rollercoaster with Jack and Matt flown again by the Royal Flying Doctor Service to Melbourne. Jack’s shunt had blocked and through some miracle his heart had grown a ‘collateral artery’ to make up for that and the collateral artery was the only thing keeping him alive. Christmas morning 2005 was truly awful. Jack and Matt were in ICU in Melbourne and I was putting on a brave face for Lara, almost 4 years old, knowing that we would all be deserting her on Christmas day. Once again Jack was hanging on by a thread and we felt that it would be best for everybody if Lara stayed home with her Grandparents. I flew over to Melbourne 10am Christmas morning.

The hospital Chaplain Christened Jack on Christmas Night and he had open-heart surgery on Boxing Day. Dr. Christian Brizzard was very happy with the surgery but Jack had problems again with fluid building up around his lungs, even worse this time, and we ended up spending almost 2 months in Melbourne. During this 2 months Jack had 6 trips to the operating theatre. We were there for Christmas, New Years, Lara’s first day of Kindergarten and her 4th birthday. Lara came over to Melbourne a few times with her Grandparents for a week here and there and we had a birthday party for her at Ronald McDonald House that year. Finally we were allowed to go home, late February.

From there we went on with our adjusted version of ‘normal life’ with regular appointments at Cardiology. Mums at Kindy would all say what a beautiful, big, healthy boy I had and I would just think – “If only you knew what he had been through”. There was nothing about Jack that would lead anyone to believe that he wasn’t completely well, until you looked under his shirt of course! He began swimming lessons at 6 months and crawled at 8 months. He reached all the milestones on time and we counted our blessings every day. Everything was going great until, at a regular Cardiology check-up, we were told that he had developed a Sub-Aortic Stenosis and his remaining VSD’s would require intervention too. We would need to return to Melbourne for our first ‘planned’ surgery 2 months later. With that, and our journey so far in mind, we had a huge 1st birthday party for Jack and left for Melbourne at the end of October. Jack had his second open-heart surgery at 13 months of age where the Stenosis and VSD’s were repaired. Again Dr. Brizzard was very pleased with how it all went. However things took a turn for the worst when Jack went into cardiac arrest in ICU the following day. Dr. Brizzard then informed us that the electrical pathway between the Atriums and Ventricles had been permanently damaged during the operation and Jack would now require a permanent Pacemaker which his heart would be fully reliant upon for the rest of his life.

What next? What else would we have to deal with? Who has ever heard of a 1 year old with a pacemaker? (Well, plenty of people it turns out, but not us at the time). So back he went to surgery the following day to have a permanent pacemaker inserted; dual leads were attached to his heart and the box was implanted in his abdomen. We were told he had no underlying rhythm which meant that if anything happened to the pacemaker it would mean he would go into immediate cardiac arrest After almost a month we returned home, again to revise our understanding of ‘normal life’.

Having a child with a pacemaker brought a whole new set of concerns and physical dangers that we now had to constantly monitor. He was also just starting to walk, and fall. We had to educate ourselves on how to keep him from danger knowing that certain activities could possibly damage the leads or the box itself. It’s not easy to get a 14 month old boy to slow down as he learns to walk and climb and run and jump! We realised we would have to be his ‘understanding’ until he was old enough to understand for himself the things he should and should not do. With concerns that the smallest fall could damage his pacemaker or leads, he was always under constant supervision and we revised our CPR training just in case. Everything was going great and Jack was again reaching all the milestones and getting really good reports from Cardiology and from his pacemaker check-ups. We made it through Christmas (Jacks first real Christmas) and then Lara’s 5th birthday and her beginning of school. With every day and every new skill he learned we felt a little more confident that Jack was becoming more and more capable of looking after himself and therefore in less danger.

Then in July 2006, when Jack was 21 months old, we experienced our worst day ever, when for no explainable reason, the area of the heart where Jack’s pacemaker leads were attached became inflamed and the electrical pulses from his pacemaker were no longer getting through to make his heart beat. I was terrified that this might be the moment when I would have to perform CPR on my own child but thankfully his heart managed to find an erratic 40 beats per minute which bought him enough time to get to hospital in an ambulance and for his pacemaker power output to be temporarily increased. He was stabilised and a harrowing sleepless week later, we headed back to Melbourne for the 4th time. Jack had to have the entire pacemaker replaced. This time though Dr. Brizzard managed to attach the leads to an area on his heart unaffected by scar tissue and the results were immediately better than the first time. Three weeks later we headed home again and since then (touch wood!!) everything has been very stable and positive. Jack is a fit and healthy 2 and a ½ year old, full of character and charm and energy and life. He will need further surgery to replace artificial parts used in his heart repair as he grows but hopefully that will be some time off yet. He will also need to have the pacemaker battery changes every 10 yrs or so for the rest of his life.

That moment, when Jacks pacemaker stopped working properly, taught us a few really important things. It taught us that we can spend every minute of every day watching him like a hawk trying to protect him from dangers and yet something completely unexpected and unexplainable can knock us over. It taught us to lighten up and let him live life to the full. It taught us that we CAN handle every crisis that is thrown at us. It saddens us to no end that Jack has to travel such a hard road but we know we can rise to the challenges as parents and we WILL make it through. We have learned that a messy house just means that the kids have played hard that day and we are thankful that they can do that, together. We have learned to laugh when our children are a little mischievous because they deserve every bit of fun they can get after what they have been through. We appreciate every waking moment with our fantastic, clever, funny, busy, beautiful children.

South Australia