HeartKids

Welcome to our page for Heartkids Australia.

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Heart Kids Australia

Heartkids is a fantastic support group for families of children with heart disease.  Our beautiful daughter, Coby, is a Heartkid.  February is Heartkids awareness month, and today was Heartkids Charity Day.

When we first started planning this trip 10 months ago, we were unaware of Coby’s heart condition.  Then, just by chance, we went to see Dr Nick for another unrelated reason (Coby is missing a collarbone).  As we were about to walk out of his office, he asked if we had any other worries.  We were a bit concerned that she seems to have trouble keeping up with her very energetic younger brother.  He immediately listened to her heart and heard what he thought was a heart murmur.  A few weeks later she had an echocardiograph and her heart condition was diagnosed.  She has an atrial septal defect (ASD), a hole in her heart.

Coby was born in London in 2006.  She has always been a sickly child.  I remember going to the doctors every 2-3 weeks in infancy with ear infections, chest infections, constant vomiting and failure to thrive.  The list went on.  Despite 2 minor operations (grommets and an infected abscess), her condition was never picked up.  We were actually relieved she has been diagnosed at all; because it needs an experienced doctor/paediatrician to hear the abnormal ‘swoosh’ in her chest.  Apart from the higher incidence of minor lung issues, and a being a rather slender child, there are no major symptoms of ASD.  People with Coby’s condition, left untreated, have a significantly reduced life expectancy.

Honestly, if you child had to have a congenital heart defect, an ASD is much less scary than other conditions.  There are two methods to fix it, and one that doesn’t even involve open heart surgery.  It’s called a catheter procedure, which involves putting a ‘patch’ through her groin, up an artery into her heart.  This is a technique that has been around 16 years, and has a great success rate with relatively few complications.  Unfortunately, Coby’s hole is 16-18 mm, which is rather large.  Her specialist believes it is possible to fix her via this method, but we won’t know for sure until they try.  We may still be facing open heart surgery.

We joined Heartkids not so long ago.  Even before we joined (when we sent off for the application form) we got a great information pack from them, which gave us loads of useful information.  Within a few days of joining, we got a welcome phone call from one of their representatives to see how we are going, and to ensure we had all the information we needed.  I’ve already had the opportunity to meet other Heartkids families that live in our area, and hear about their experiences.  I know Heartkids will be a great support for us when we truly need them.  Coby - Our Princess

But for now, Coby’s doctor has given us the go ahead to continue on our trip as planned.  As soon as we get back, she will have another check-up, and we will begin the next stage of our Heartkid journey.  Until then, we are going to live our lives to the fullest, and enjoy this once-in-a-lifetime opportunity together as a family.

Heartkids are a very worthy charity to support.  If you are interested in finding out more, please visit their website at:

www.heartkids.org.au

4 Responses

  1. Hello Smith family I stumbled across your website looking for tips, places to stay etc caravaning with children. We are planning a 6 month trip up the east coast leaving South Gippsland Vic in march 2013 with our two boys who will be 4 1/2 yo and 2 yo and noticed you are a fellow heartkids Vic family. Drew my youngest also has a ASD, which will be repaired later this year, and plumonary stenosis. Ive had a breif read of your travels and saved your site so both my husband and i can read more of your adventures. Wishing your family and especailly Cody all the best for her surgery and fingers crossed it can be repaired via cath lab.

    • Hi Shandelle, Thanks for your comments, and I’m glad you like the blog. Sounds like Drew and Coby will be having their surgery at a similar time. We found out a couple of months ago that surgery is Coby’s best option as her hole is around 3 cm. But her outlook is good, and once the surgery is done, so is unlikely to need any further intervention. I hope Drew is as lucky.
      I hope the blog is helpful in preparing for you travels. My best advice is, enjoy it. Your children are only young once, and that precious time together is what makes life great. best regards

    • Hi Smith Family and shandelle, I too stumbled across your blog and have been reading it with great interest. We, myself, hubby and 6 year old son and 3 year old daughter will be heading off from SE outer suburbs of Melb in May 2013 for hopefully 6 month trip around OZ, we have a pajero and expanda van heading up to Cape York through Arnhem Land and all down the west coast etc – cant wait! might catch up with some of you along the way. All the best for your trip and your beautiful daughters surgery.

  2. Hi Coby, I hope the ASD is minor, possibly require invasive or open heart surgery and then all will be ok. I on the other hand like Coby, was born with an ASD and not diagnosed. I was never the sickly child but I always pined for a ‘siesta’ after school and after uni. I miraculously (as per my surgeon) fell pregnant with my now 6yr old son, had a ‘textbook’ baby but was constantly tired. When my son was 2 1/2 yrs old, I awoke from my sleep with an irregular heart beat. To cut a long story short, 3 months later, after extensive tests, I had open heart surgery. I am cleared of all cardiac abnormalities, only seeing a cardiologist for an annual checkup. I have more energy now than I did in my 20s.
    I’m glad you are proactive with your daughter’s health. I work in the medical industry and like all jobs, some professionals are better than others. Keep knocking on different doors until you’re satisfied with the outcome. x

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