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Connor’s story – journey to a new heart valve

heartkids - connor feature**trigger warning – image below may be distressing**

Some of the most horrendous words you will ever hear as a new parent are “Your baby is very unwell”. These were the words I heard just after midnight, 6 hours after my second child was born. I was alone, groggy (after a Caesarean section birth) and immediately panicked! The words “congenital heart defects” entered my world.

As we all do, I had our routine scans done, and was told our baby was completely healthy. I had a blissfully uneventful pregnancy and after a beautiful healthy daughter born 2 years prior, I never in my wildest dreams imagined there would be something not quite right with our much anticipated second. I wonder now in hindsight whether prior warning of Connor’s heart defects would have made the blow any easier to cope with. Regardless, the blow came and it was brutal and shocking to me, unlike any other I’d ever dealt with before.

15 hours after he entered the world, Connor was embarking on his first air journey, first class in Royal Flying Doctor Service (RFDS), Rockhampton to Brisbane. When I think back on all that happened, this is probably the hardest part. My newborn was intubated (breathing tube), with drips and monitors all attached and was taken by people I didn’t know, all the way the Brisbane without his mummy or daddy to hold his tiny little hand.

Around 5pm, whilst hospital staff were still trying to arrange my transfer to Brisbane and we are scrambling to get flights for hubby, the cardiologist rang with his diagnosis. Our son had critical pulmonary stenosis – his pulmonary valve was letting through only about 2% blood flow. Added to this, he had 2 holes in his heart. We gave verbal consent for a procedure to be done first thing the next morning – our son would be 38 hours old.

I don’t actually remember much more about the following hours. I got to Brisbane via RFDS, hubby got there thanks to frantic work by his sister getting a flight. We arrived at the hospital just in time to kiss our precious boy on his way to his procedure. That day Connor had a balloon valvuloplasty. A catheter was inserted in his femoral artery all the way up to his heart. A balloon was inflated to attempt to stretch his valve to increase blood flow.

heartkids - connor

This all sounds very simple when put like that, but when you consider that these guys are working with a baby’s heart approximately the size of a strawberry, it’s incredibly intricate and risky. This procedure went relatively well, but not without hiccups. Instead of stretching, Connor’s valve tore. His heart also took a bit longer than desired to adjust to its new kind of normal function. But the resilience of these little HeartKids is amazing! He turned the corner and then quickly started taking off!

During the first week after Connor’s birth, our daughter Mariah was cared for by her two sets of grandparents. Just another element of hard! This little girl had been my world for 2 years and I felt as though I had abandoned her. Her daddy flew home and then drove back with her to be with us as a family. When I picked her up she simply said “Mummy” and cupped my face in her hands. She had such wonder in her eyes, and I still to this day wonder what she thought at that moment. Had she thought I was gone and had left her?

After all of this, we got to bring our boy home! Never had I ever been more happy to be home!

Connor is now about to turn 9. For the most part he has a normal little boy life. Doesn’t really like schoolwork, loves riding his bike and scooter and going to the beach, even plays footy! He tires quicker than his mates though, and the usual colds and flus pose a bit more of an issue to him. But we have found ourselves going longish periods without thinking about Connor’s heart. And occasionally we come back down with a thud, and it’s then that my heart literally aches. I never thought that was a real thing before, a heart ache, but it is!

Connor is currently in a watch phase. Kind of like a holding pattern. Sometime in the future his valve will need replacing. It’s a matter of not letting his heart deteriorate too far and not replacing too soon so he doesn’t outgrow a replacement valve too rapidly. There are times, now that he’s older, that Connor gets scared. He is a bright little man and asks many questions. At age 7 he googled “new hart valf oparashone”. We have done our best to answer his questions, but some of them are very hard! One thing is for sure though, he is brave and he is loved, and with those things on his side, he will tackle the future head on, with us by his side!

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Thanks to mum Jess for sharing Connor’s story.

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