Precious Hearts

If you have ever had to occupy a child in hospital, then you will understand what a life saver this gift was to us!  Julian had been booked in for his surgical procedure – creating a hole in his heart (in effect, an ASD – Atrial Septal Defect) and putting in a stent to keep it open - on Wednesday 3^rd August, 2011.  He spent the day fasting (and didn’t complain once, I might add – colour me surprised!) and entertaining the little 4 year old boy in the bed next to him who was due to have a Pacemaker -  is ‘put in’ the wrong way to word it?  Unfortunately, there was a complication with the procedure before Julian’s and the specialists opted to postpone Julian’s until the next day.  Nigel and I were fine with that, and Julian just wanted to chow down!

In my previous post of “Too long to diagnose, almost too late”, I briefly mentioned a charity called ‘Precious Hearts’ and that the nurses on the Cardiac Ward gave Julian a gift from this particular charity, which was a bag of puzzles, games, etc, as a reward for doing so well and keeping young Aodhan occupied and happy until his surgery.  

Did you know that 1 in 100 Australian babies are born with Congenital Heart Disease, and chances are, you may know one; my daughter Ella-Shae and youngest son Boey, both have CHD’s (hopefully it will repair itself as Ayan’s did), and Julian has an Acquired Heart Disease, which means that he wasn’t born with it, it developed as he grew.

Precious Hearts is a wonderful charity that gives these children a reason to smile and relax while in hospital, and also supports their families who are always and forever by the sides of their children.  It’s founders know firsthand what children with CHD go through.  A hospitalisation can last as little as a week, and as long as several months.

Children are extremely restricted after open heart surgery, their movements are limited and most of their days are spent in bed or in a chair; they have drains that are required to stay in place after surgery.

Precious Hearts provides Care Packages to children recovering from heart surgery, a gift which lifts their spirits and helps them pass the many idle (and boring!) hours spent during their recovery.  They are age appropriate – Precious Hearts caters for birth to 16 years of age - and filled with items such as colouring and activity books, pencils, textas, crayons, story books, puzzles, toys, the list goes on and on.  The Care Package program is running at The Children’s Hospital Westmead, where there are close to 1000 heart procedures performed each year.  The Care Packages are kept on the cardiac ward and distributed by nursing staff when the children return from the Intensive Care Unit (ICU) after their surgeries.  Care Packages are also sent out every week to children in hospitals all over Australia.

Each bag is packed by a Precious Hearts volunteer, no two packages are ever the same, and a lot of care is taken to ensure that all items are suitable for the age of the child who will receive it.  This is the Care Package that Julian received after his procedure was postponed: 

Precious Hearts is operated entirely by a handful of volunteers who have all been personally affected by CHD and are driven by their wish to extend a helping hand to others families in the same situation.  They work hard to raise funds every year, all year round, and volunteers also work hard to raise awareness of CHD within the community.

So, how can you help?  There are many ways to help Precious Hearts get these sanity saving Care Packages to children (and parents) who desperately need a bit of distraction in their lives.   

*  You could organise a Donation Drive with your local school, and it’s the perfect way to fill up those bags – although they do ask for only new items to be donated.   

*  Start a Coin Collection at work,  donate a voucher for a food outlet, or even fuel.  Precious Hearts even gives iTunes vouchers to teenagers stuck in a hospital bed!   

*  Sponsor a Care Package for $30 and it will be given to a child in your name.  

*  If you would like to help out with a cash donation, all donations over $2 are tax deductible.  You can donate on their Give Now Page:  http://www.givenow.com.au/precioushearts

Precious Hearts is a wonderful charity, and they are helping our young Heart Kids enjoy a bit of fun and time away from their worries, at a time when life could overwhelm them.  Head on over to their Facebook page to read about all the families they have helped out:  https://www.facebook.com/preciousheartspage?ref=ts&fref=ts

Julian’s stay in hospital for his surgical procedure was a very stressful time.  Precious Hearts helped to take away a lot of the worry, and boredom, and made the rest of our stay so much easier.

Thank you, Precious Hearts, from The Summers’ Family.

Knowledge is Power

I've never enjoyed being in a hospital.  They smell funny, everyone's always in a rush, and the cafeteria food never really looks much better than something scraped off the kitchen floor.  So you can imagine how I feel about having to spend an entire day in one every three months . . .

My eldest child, Julian, turned twelve last November, and graduated Primary School in December last year.  These were two huge milestones for my husband, Nigel, and I.  Actually, it was a fairly big deal for his younger siblings, grandparents, aunts, uncles, cousins and pretty much everyone who knows him.  

You see, on Saturday 6th March 2004, Julian was diagnosed with a rare and life-threatening heart/lung condition called Idiopathic Pulmonary Arterial Hypertension - or as it was referred to then, Primary Pulmonary Hypertension (PPH) - and we were told that this condition has a mortality rate of 2 - 5 years.  In fact, we were told that it wasn't likely that he would survive this condition to start Preschool (he was just under 3 1/2 years old at the time).

Despite Julian being diagnosed over 8 ½ years ago, I’m still not as well versed in his condition that I would like to be (a layman can only understand so much before the brain says ‘enough’!), but I’ll do my best to explain it for you:

Idiopathic Pulmonary Arterial Hypertension is a rare condition, involving heart and lungs.  A person with IPAH has high blood pressure in the blood vessels of the lungs, and the walls of these blood vessels are ‘constricted’, making it more difficult for blood to flow through them.  As a result, the right side of the heart has to work so much harder to push blood to the lungs, and overtime, becomes enlarged.  The additional strain the heart is put under because of this can eventually lead to heart failure.  Unfortunately, the causes for Idiopathic Pulmonary Arterial Hypertension are unknown, and it actually affects more women than men, and is even rarer in children.

Julian is one of 4 children in Queensland with IPAH – 3 boys and 1 girl – and as far as we are aware, was diagnosed the youngest and has been diagnosed the longest of them all.  The kids range between 12 and, I think, 15.  They all get along great, and encourage each other when they spend the day at their clinic once every 3 months, and there’s even a bit of friendly competition with the boys to beat the girl, who is currently beating the pants off them!

I'm new to blogging, but I decided to create 'Saving Jules' in the hopes that other parents will chance upon my blog and discover others on the same journey they are, and realise that a diagnosis is not a sentence.  Yes, we face every day with the knowledge that this may be Julian's last, but what a journey we are on with him!  We have met wonderful people with a huge capacity for compassion, discovered new depths to love, shed tears, hurled abuse at God and Life, and believe it or not, shared a lot of laughs.

Come, share our Journey.