My Two Boys

Rebecca Hill photos 2My story starts nearly five years ago on 28th January 2010 when I welcomed my son Deacon Peter into the world.

When I was 18 weeks pregnant with Deacon, I went for a routine scan in my home town of Wodonga and two hours later I was called into the doctor’s office and told there was an abnormality. From there I was sent to Melbourne to see Professor Sam Menahem who diagnosed my baby with an Atrio Ventricular Septal Defect and a narrowed and leaky mitral valve. Knowing that my baby had a heart condition, I had to deliver him in Melbourne.

He was placed on life support and was very sick. Nothing was helping my boy. That’s when they decided surgery was his only option so Deacon had surgery at three weeks old which took nine hours.  I received the phone call telling me it was completed after a few complications – he needed a temporary pacemaker and three blood transfusions.  Although the holes were repaired, the valve was narrowed and is narrowing more and more. He will require more surgery in the future.

My second child, Kace Timothy Charles was born 30th June 2014 and is also a heart child.  He had his second open heart surgery earlier this year, which was nearly ten hours long. He has multiple VSDs in the muscular part of his heart that are near impossible to repair.  When Kace had his first surgery  the surgeon explained he tried three times to repair the holes but couldn’t control the shunt and they decided his best option was a dissolvable  Pulmonary Artery  band. His second surgery was to put a permanent Pulmonary Artery band on. The cardiologist has said he may need another surgery before he is two years old, to close the holes.

Rebecca Hill photosWe recently received the results of genetic testing and both boys have Holt Oram Syndrome. They are both doing well.  Kace has check-ups every three months with the cardiologist, monthly check-ups with our local paediatrician and weekly weighs with our maternal child health nurse.  It is anticipated that he will have his third heart surgery next year and will also undergo hand surgery very soon.  We don’t know when Deacon will have his second surgery yet.

I can’t thank the team at The Royal Children’s Hospital enough.  If it wasn’t for them, my boys wouldn’t be here.

Written by Rebecca Hill

Victoria & Tasmania