Oliver’s story starts like many other medically complex kids – during our routine 20-week anatomy scan the tech was unable to visualize a couple images of the heart. We were referred to Fetal Assessment at Royal University Hospital (RUH) in Saskatoon for further imaging. Well into 3rd trimester we finally received our diagnosis: our son has a congenital heart defect known as Tetrology of Fallot.
Tetrology of Fallot is a critical congenital heart defect, that presents as four defects in one and usually requires surgery soon after birth. TOF presents as 1. Holes in the heart between the chambers 2. A narrowing of the pulmonary artery 3. Enlarged aorta 4. Thicker right ventricle.
I remember asking Dr. Bradly “Will this fix itself with time?”. The answer of course was a no, but as new parents we were trying to process this information. We were set up with Pediatric Cardiology in Saskatoon and Oliver’s case was referred to the Stollery Children’s Hospital in Edmonton where his open-heart surgery would take place.
Oliver was born on April 11th, 2018. 48 hours after he was born, Oliver was flown to Edmonton via Air Ambulance.
Oliver’s first 48 hours were full of the expected and unexpected, there was more to Oliver than ultrasounds could reveal. We learned shortly after he was born that is was possible that he was blind, as the NICU team was not able to open his eyes. I can recall being in Ikea, 4 days post-partum (we needed a break from the hospital) holding a set of puppets and crying because I didn’t know if our son would ever be able to see them. Genetics was called in to see if an answer could be found for his heart and eyes.
Oliver underwent open heart surgery at 5 days old. The Doctor’s at the Stollery felt that Oliver was strong enough to perform the higher risk “one and done” surgery. This meant that he would not need another open-heart surgery during childhood, and likely any additional surgeries could be done via catheterization.
Oliver remained at the Stollery for 3 weeks, with complications including a wound infection, and a hard detox from the medication. Oliver came back to Saskatoon and stayed in the NICU for another 2 weeks.
While at the Stollery, Ophthalmology came to assess his eyes. He opened his right eye 10 days after he was born but his left remained closed. They determined that there was an eye on the left side via ultrasound, but they also could not open his eye. We were referred to an Ophthalmologist in Saskatoon who diagnosed him at 4 months old with a very rare condition called Micropthalmia – meaning that one (or both in Oliver’s case) of the eyes develop smaller than average and may or may not have normal vision. Oliver’s right eye, while smaller is perfectly healthy. His is however blind in his left eye, as it did not develop an iris or pupil. Oliver received his first scleral shell (ocular prosthetic) at 7 months old, from Jon at Prairie Ocular Prosthetics in Saskatoon.
Oliver’s first year was a series of trips to the hospital, emergency room (for a staph infection and severe GERD (reflux)), therapy at the Alvin Buckwold Child Development Program at the Kinsmen Children’s Centre and many doctor appointments.
Shortly before his first birthday Oliver was diagnosed with a Global Development Delay. Genetic results had not revealed a conclusive diagnosis, though a variant of unknown significance was found, carried on his X-chromosome. We are still currently followed by Genetics on an annual basis. During this time, he also underwent an angioplasty to enlarge his left pulmonary artery to increase blood flow to his left lung, as the artery was almost folded over on itself restricting blood flow due to the position of his heart in his chest.
Just after Oliver’s first birthday he began to refuse a bottle and wasn’t eating solid foods consistently. In May 2019 Oliver was diagnosed with failure to thrive and placed with a Nasogastric (NG) feeding tube as a temporary solution. While in the hospital for his feeding tube placement he suffered an anaphylactic reaction to cow’s milk protein. After that we learned he was allergic to the protein in dairy, as well as eggs and soy.
Oliver’s temporary feeding tube solution ended up lasting 17 months. By the end we would be replacing the tube daily as his skin was so fragile from the tape that it was raw and would bleed. We weaned Oliver from the tube in October 2020 and we just reached the 1-year tube free mark!
As Oliver has gotten older, his energetic and goofy personality has come through. He is a fun loving, mischievous little boy, who loves new people and exploring his world. Medical appointments have become less frequent and manageable. Oliver currently loves spending time at daycare, playing with buttons (and phones, he’s really good at Spotify) and loves anything to do with water. We were able to take him to Maui in February 2020 to play in the ocean – he loved it!
Our medical journey with him isn’t over, and we can’t wait to see what the future holds for him. We are so blessed to be his parents and cannot wait for him to become a big brother in February, he already tries to hug the baby.
We would not change Oliver for the world – as he has taught us so much as parents, but every day we fight to change the world for him and other children and families like ours.