Zach's story

Zach was born on the 17th April 2010; he was full term (all but 4 days) and a healthy 7lb 4oz.

I had to have an emergency c-section under general as his heart beat kept stopping.  After birth he was apparently fine - I was told he had a simple heart murmur.  I wasn't too great as I had to have blood transfusions.

After being home for a few weeks Zach started not feeding well, losing weight, his tummy kept getting very distended and his breathing wasn't right.  I knew something was up, I had two elder girls and mother’s instinct just told me something was wrong!  I took him to my doctor who agreed something wasn't right, so he sent me to my local hospital, and they looked Zach over and said it’s just a chest infection.

Every week from then on I would go back to the GPs and they would send us to hospital, but they still kept on saying there is nothing wrong!!  I had enough by 5 months, so had my GP send me back to hospital with a very stern letter demanding tests were undertaken at once.

A nurse came into Zach’s room and said to me he looks very grey.  I didn't think anything of it, he always looked pale just like me - I had no clue about heart defect symptoms then.

An hour later Zach was taken down for an echo, then my world crumbled!  They told me that Zach needed to be rushed to the cardiac hospital for open heart surgery ASAP!

Me and Zach were blue lighted to the hospital that night an hour after being told.  Zach had a severe mitral valve regurgitation and severe pulmonary hypertension, and needed his valve repaired to live.  He went on to have two mitral valve repairs fenestration of the arteries and a patch.  All within 7 months.

Then 4 months after his second repair I got the news that it just wasn't working and Zach needed a replacement mechanical valve, which would require him to be on blood thinning drug, Warfarin, for the rest of his life.

He had the replacement in August 2011, and in Jan. 2012 I was told that he will need the valve replacing again this year as he has out-grown it already!

Zach is a strong little boy, but has been through so much in his 22 months!

Zach doesn’t talk or walk, but he has just started to learn sign language and attempted his first word "mumma".

We have been told Zach has other health issues now.  It's very hard, but his smile and determination keeps us going.

Natalie, 2012

How to spot if a baby has heart disease at home: Think HEART