Riley was born a healthy 8 lbs. last October, but over his first couple weeks, he failed to get back up to his birth weight. At 5 weeks old, he was still shy of 8 lbs. and his stomach was swollen and hard. The family was referred to emergency at the Alberta Children’s Hospital. It initially seemed Riley was not getting enough calories in his diet. But after a follow-up X-ray , Riley was sent back to emergency and that’s when the term “Hirschsprung Disease” first popped up. Teresa had never heard of it before, but her husband – an operating room nurse – knew what it was. At this point, Riley’s stomach was the size of a small soccer ball. During a contrast X-ray, he released weeks’ worth of waste that had been blocked in his intestine causing the uncomfortable distention.
A biopsy of his bowel confirmed the diagnosis of Hirschsprung Disease, which means Riley was unable to have proper bowel movements due to a lack of nerve endings in his bowel. He spent a week in the Edwards Family NICU, where Teresa says the care was absolutely amazing. The nurses were so attentive and caring, especially when she found herself having a few breakdowns over everything her poor baby was going through. Nurses from the hospital’s GI unit came to visit and taught her how to manage Riley’s care at home for the coming weeks. He would require bowel surgery, but first he needed to gain weight to be strong enough for it.
On Jan. 19 (just 3 weeks ago!) Riley came into the hospital for an intricate, laparoscopic operation by Drs. Steve Lopushinski and Mary Brindle and their team. Thanks to Radiothon donors from years past, they were equipped with minimally-invasive surgical tools and a high-definition camera for the surgery. Throughout the operation, the team was doing multiple biopsies to find out where the defective part of the bowel began and ended to ensure they removed all of the impacted area but did not take more than they absolutely needed to. They ended up removing 25 cm of bowel.
Now, Riley is home “eating and pooping and gaining weight like a champ!” says Teresa. She is very grateful for the expertise of the surgical team at the hospital as well as the staff in the NICU who were so doting during the short time that it was “home” for her and Riley.
To hear more stories like this or to donate to the 2017 Caring for Kids Radiothon in support of the Alberta Children’s Hospital Foundation visit www.KidsRadiothon.com