Justin's Story❤️⁠


Justin was born at 39 weeks with a whole lot more wrong with his heart than the AVSD he had been diagnosed with, in utero. A day after Justin arrived, my husband and I were gently informed that our newborn son had an Interrupted Aortic Arch, 2 different holes (VSD & ASD), aortic valve stenosis and a PDA. Because of the extent of the stenosis, the doctors weren't really considering surgery as a viable option.

After 3 days and a whole lot more scans, tests, doctors, tears and prayers, they agreed, with our blessing, to operate.

On the morning of day 10 in NICU, where they had been keeping him going with medicine, Justin went into surgery at around 8am and arrived in cardiac ICU at about 15h00. 7 nerve wracking hours later. By day 4 post op he had removed his own ventilator pipe (which is another story!) On day 8 post op, he was transferred to High Care. 3 days later, at 21 days old and 11 days post op, we were discharged home.

Justin's team of doctors have been keeping a close eye on his development via regular checkups involving ECGs, x-rays, ultrasounds and physical examinations.

At 4 months of age, a coarctation (narrowing) was noted in his aorta and he was hastily booked in to hospital to have the coarc stretched via balloon dilatation in the catheter lab. The procedure was successful.

We continued having regular checkups. Justin was growing and developing well, meeting (or exceeding!) all of his milestones, growing into a very bright and lively little character. At the age of 2, he was admitted for another balloon dilatation as the same part of his aorta was a bit too narrow again. Once again, success.

Just after his 4th birthday, Justin was once again admitted for the same procedure for a 3rd time. The goal was to stretch his aorta periodically as needed until he grew big enough to insert a stent. Unfortunately, this time, the procedure was mostly unsuccessful. His aorta stretched and then bounced straight back to almost the same size after. So, to keep his BP down, his medication was increased and his medical team continues to monitor his progress until he reaches around 25kg - big enough for a stent. This is very disappointing, but what a pleasure it has been to watch this little man grow like a weed, develop the most charming personality and build lots of special relationships. Our heart journey is far from over (I'm also a CHD survivor!) but we take each day as it comes and enjoy our lives and our wonderful children to the bests of our abilities. ❤

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