When Janine was pregnant she caught a cold that resulted in her baby Julian developing viral cardio-myopathy – a condition which significantly enlarged his heart. At less than 2 weeks old, he became so sick that he was put on Extra-Corporeal Life Support (also known as ECMO) and needed to be transferred from Vancouver (where he was born) to Edmonton. On the flight there, he suffered a stroke. In Edmonton, he was able to receive a heart transplant and, at four months old, was then transferred to the Alberta Children’s Hospital where he has been cared for ever since.
Julian recovered nicely from the transplant. But at 2 ½ years old began having seizures as a result of his stroke. Medications helped for about a year but then seizures began getting worse. In Oct 2015, mom woke up to find Julian blue and in a coma. She rushed him to ACH where he didn’t wake up for 3 days. Stronger medications were prescribed. But the usually happy boy became experiencing changes in his personality – at times very sad, even talking about jumping out a window or off a cliff.
Surgery was recommended but mom was worried about having Julian’s brain operated on, fearing he’d lose strength in his already weakened side. She reluctantly agreed to surgery after he began throwing up from his meds. Still worried, just 10 days ago, while Janine was in the kitchen and Julian was watching Sponge Bob in the living room, she heard him scream and ran in to find him with bumps on the front and side of his head. He’d had a seizure and must have hit his head but had no memory of what happened. What put Janine’s mind at ease was the 3T MRI images Dr. Hader and his team showed her to show her the precision of their upcoming surgery.