Heart Children

Children's Profiles

Lucas' heart story

The following passage, written by Lucas’ Mum Jenny, is a touching account of one family’s story behind the statistics … a glimpse into the good days and the bad days of a family living with childhood heart disease. Lucas was eight weeks of age when we took our very happy and seemingly healthy baby boy in for his first doctor’s visit.  At this stage of parenthood our good days were defined by enough sleep for everyone and not too many nappy explosions.  Everything went well until our doctor checked Lucas' heart and said she could hear a faint murmur that would need to be checked by a specialist.

We spent the next three weeks waiting for the specialist appointment, hoping for the best and trying not to get too worked up.  At the Auckland heart clinic the murmur was investigated and initially believed to be fairly inconsequential.  Given the distance we had come to attend the clinic it was decided to do an echocardiogram, that way we would know once and for all the size of the hole that was causing the murmur.  We were keen to get it all over with and be off home. 

The echo showed the hole was much larger than anticipated and that the valves in Lucas' heart were leaking.  Suddenly we were faced with a serious but treatable diagnosis and the likelihood of corrective open heart surgery for our smiley gorgeous boy. 

As first time parents it was a lot to take in and we left for the day, two very distraught parents clutching a Heart Children booklet.  When we collapsed in front of the television that night the first advertisement we saw was for the Heart Children Week appeal.  We were hit again by the fact that our boy was just one of the twelve children each week born with a heart condition.  Nothing seemed fair and it was all so unknown.  

Over the coming months we had further check ups and at nine months of age the decision was made that surgery would be best done 'sooner rather than later'.  Lucas was still a happy baby but not putting on much weight and one side of his heart was becoming enlarged.

Five days after Lucas' first birthday he was in surgery - six hours during which we had our darkest moments.  The call from the operating room came, he was off the heart and lung bypass and the surgery had gone well. What a huge relief.  It gave new definition to a good day. 

While on the ward we were visited regularly by Heart Children NZ’s family support team.  It was amazing to find out that such an organisation existed and that there was so much support available. 

We spent all day and most of every night sitting with Lucas while he recovered and found the parents room on the ward invaluable.  It also provided a place to meet with other parents faced with similar situations.  We were lucky to be in and out of the hospital within a week and felt so sad that children who had been there when we arrived were still there when we went back a month later.

A week at home and we were contacted by Heart Children to see how everything was going.  It was that continued support, once out of the security of the hospital that was so reassuring.  We continue to stay up to date with other families who face similar challenges and concerns. It’s comforting to know that Heart Children will continue to be there for us as a family and for Lucas, as he grows from a child, to a teenager and as a heart adult … through the good days and the bad.  Because when you’re living with childhood heart disease the good days really matter.  Heart Children’s work is funded solely by voluntary donations. Help us to help heart children and their families through the good days and the bad.  You can help Heart Children now by phoning 0900 4 HEART to donate $20, or donate online now. To find out how else you can help heart children have more good days click here.