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I had an unremarkable pregnancy, no complications, no signs that anything was wrong with my baby, even after three ultrasounds. It was Christmas Eve, and I went into labour. We drove through a snowstorm to get to the hospital; it sounds like it’s from a movie. Harrison was born on Christmas morning at 9:52 am.

Upon the NICU teams’ assessment they noticed a loud murmur in his heart. We were told that heart murmurs are often normal in newborns and typically close within a few days. The next day the murmur was just as loud though, and we were told that he would need an ECG and an Echocardiogram. He had the ECG and the cardiologist informed us that he suspected Harrison had as Ventricular Septal Defect (VSD) but that it was safe to go home until his echo later in the week. When we came back for the echo, we were hit with three diagnoses’ that left us speechless and terrified for his future. He was formally diagnosed with VSD, vascular ring and pulmonary stenosis on December 29th. While still processing all this information we were informed that he would need to be admitted to the NICU that day until he could get further testing as the hole in his heart was quite large. They let us know that they needed to do further testing to get better images of his heart to determine if he needed to fly to Edmonton the next day for surgery. We were terrified to say the least.

While in the NICU he had a CT done, ultrasounds, a lot of pokes for blood work & genetic testing among other things. After all the test, they determined he did not need surgery until he was bigger. We were excited to bring him home again, however, the day before he was supposed to be discharged, I noticed him doing some weird twitching. I quickly recorded it and showed the nurse as I had suspected it was a seizure.

The nurse got to witness it in person the next time. Immediately the room was filled with the doctor and many nurses all doing different tasks. Harrison was hooked up to an IV with anti-seizure medication and an EEG machine overnight. After a different EEG the next day, the neurologist confirmed that it was seizure activity, and he would need to be on anti-seizure medication for the next few months (which ended up being an entire year).

The last test he needed was an MRI and he was cleared to go home! Harrison came home from the NICU on January 6th. On January 17th we got confirmation that Harrison has 22q11 deletion syndrome which would explain the seizures and heart defects.

On July 25th Harrison had his open-heart surgery at the Stollery in Edmonton. We were terrified while waiting, hoping our little trooper would do great. Due to other surgeries, his surgery didn’t start until after 4:30 pm. We were worried about the surgeon being fatigued, but a friend told us “They saved the best for last”, which gave us hope and eased our anxiety. We didn’t get to see him until 10:30pm. After surgery they said he did awesome, but that he had heart block, which can happen after heart surgeries. A few days later he developed Junctional Ectopic Tachycardia (JET), and we were informed he would be sedated until it was better. After a few hiccups and a lot of medications later, he was woken up 8 days later. On August 5th Harrison was flown by air ambulance to JPCH where he would remain until discharge. While at JPCH they worked on weaning him from some of his meds while avoiding withdrawal, and thankfully on August 11th he was discharged home.

Now, at 1 year old, Harrison is thriving. He is meeting milestones and being a typical busy toddler, you wouldn’t even suspect he had an open-heart surgery less than 6 months ago. He is experiencing mild conductive hearing loss, which is common with 22q11, but it isn’t stopping him in the slightest!

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