Owen was a full-term baby boy born May 2012 weighing only 1864 grams. Owen’s mum had a healthy pregnancy with no known complications. Owen’s older brother was born two years prior, premature at 32 weeks with bilateral ectrodactyly, so when pregnant with Owen doctors felt it prudent to monitor Mum closely as a precaution. Many ultrasounds and tests were conducted throughout the pregnancy with only findings of being smaller than expected and with two choroid plexus cysts identified on the right side of his brain. Aside from being small at birth, the only other noteworthy observation was his skin tone was very red. During the usual newborn tests, we found he was suffering from jaundice and spent almost a week in an incubator with phototherapy before being released from hospital.
Once home, Owen was found to be quite colicky without apparent cause, little appetite and still very flush in colour. As a result, we made several paediatric visits, but suggested solutions were not found to be helpful. As Owen aged, Mum noticed some mild delays in gross motor skills and his inability to fixate on objects. By the time he was 9 months old, his eyes had begun to “wander”. One morning he woke up and both irises of his eyes were absent, his eyes had turned out so far that all that could be seen was the white of his eyes. That day, he was seen by three ophthalmologists before being sent to the children’s hospital for an urgent MRI. While put under general anesthesia to perform the MRI his blood pressure while asleep was found to be well above the 200’s. As a result, he was immediately transferred to Cardiac Critical Care where numerous tests were performed but no explanation for high blood pressure found. Unfortunately, his Middle Aortic Syndrome and Bilateral Renal Artery Stenosis were not identified until months later during a parent requested CT scan. Upon this discovery, Owen was immediately admitted to hospital for monitoring, testing and hypertension management. Over the years, multiple additional diagnoses have been identified with no underlying genetic disorder including hydrocephalus, severe obstructive sleep apnea, growth hormone deficiency, hearing impairment and blindness due to glaucoma, strabismus, optic nerve atrophy and cranial III nerve palsy.
To this day, Owen remains under the care of multiple departments at the children’s hospital to manage his conditions. In consultation with paediatric and cardiovascular specialists from other hospitals, it was decided the best course of treatment for his Middle Aortic Syndrome/hypertension was to remain on medication and avoid surgical intervention. We were told Owen’s particular case of Middle Aortic Syndrome is unique in that his descending abdominal aorta does not just narrow but ends just past his renal arteries limiting the use of stents or balloon options.
We are grateful for the partnership, guidance and support Owen receives at the children’s hospital. Despite all that life has thrown at Owen, he is full of energy, a happy go lucky boy who lights up the room wherever he goes, and nothing slows him down! He plays blind hockey with the Toronto Jr. Ice Owls, loves to play and listen to all kinds of music and is looks forward to attending William Ross Macdonald school for the blind in Brantford, Ontario next fall. Owen has proven that God gives his toughest battles to his strongest warriors.
