CHD – Oscar’s Story

One in 100 children are born with a Congenital Heart Disease (CHD).  It’s a staggering number.

As it so happens, Oscar was born with CHD.  After being born prematurely at 34 weeks and 1.48kg, medical staff were alerted to his condition after routine testing for high blood pressure.

At 11 days old he was found to have a Coarctation of the Aorta and a Bicuspid  Aortic Valve.

He underwent surgery to repair the Coarctation at 12 days old at The Children’s Hospital at Westmead.

Since follow-up surgery at 10 months old to stretch the repair site (balloon angioplasty), Oscar has been thriving.

He does and will continue to have ongoing health issues as a result of the circumstances of his birth and his CHD, but he truly is a healthy, happy little boy.

 There are a few organisations that have been ridiculously helpful throughout our Congenital Heart Disease journey.  But none more than The Heart Centre for Children and The Children’s Hospital at Westmead.  The doctors, nurses, administration staff and even the volunteers who come around “just to have a chat”.  The Heart Centre for Children encompasses both the patient care and research facilities for “heart kids” at Westmead and if you can donate anything to help, please do so here.

Another organisation that I discovered after our second stay at Westmead is Precious Hearts.  Check out their Facebook page for information on charity drives, how you can donate and to see the gorgeous care packages that they provide for children that aim “to lift the spirits of children who are recovering from heart surgery”.

We received one of these lovely bags on Oscar’s most recent excursion to hospital and he (and Roo and Fraser) absolutely LOVE the toys and books that were in this lovely goodie bag.  They are age and gender appropriate (ours was labelled “Boy, 6-12 months”) and honestly one of the best ideas I have heard of concerning occupying sick kids who have limited active time.

Traci at Precious Hearts is a generous and kind soul.  She is responsible for Precious the Pram living on my front porch, after all!

If you contact them directly before your child is admitted to hospital for their operation, Precious Hearts will personalise the care package with all of the things that your child likes. Help Precious Hearts raise awareness for Congenital Heart Disease and help make some sick kids happy.

I don’t like to harp on about Oscar’s illness too much, simply because there is not much to harp on about.  My experience has been relatively easy compared to many other mothers whose children have undergone much riskier surgery and required lengthier recoveries.  Mothers who must medicate their children and have more frequent cardiology appointments.  Mothers who have come close to, or who have lost their children.  And our experience as mothers, I am sure nearly every “heart mum” would agree, is again relative to what our children experience.

We at least know and can begin to understand what is happening.  How do you explain to a baby, a small child, a teenager, that they must have their lives interrupted?  That they cannot crawl, walk, run where they please? That playing and active time must be limited?

I’ll get back to you on that one…