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You could say that the Alberta Children’s Hospital was taking care of baby Markus before he was even born. When an ultrasound at 22 weeks showed a few cysts on their baby’s kidneys, Joanne and Byron were concerned, but not panicked. When another ultrasound a few weeks later showed his kidneys were absolutely covered in cysts, that’s when the real worry started. Mum then went to regular ultrasounds each week to keep an eye on the situation and was introduced to Dr. Andrew Wade in the Nephrology department at the Alberta Children’s Hospital. He instantly put Joanne and Byron’s minds at ease. “We don’t know what we’re dealing with yet, but we know enough that we can keep him going.” Markus was born by c-section into a room full of experts all ready to care for his condition. He was whisked away to the NICU at the Foothills where he spent the next few days. Markus was diagnosed with a rare, inherited condition called Autosomal recessive polycystic kidney disease (ARPKD). To everyone’s astonishment, despite his kidneys being so full of cysts they were the size of an adult’s, they began functioning normally and the Wilsons took Markus home at 9-days-old. Because his kidneys where so enlarged with cysts, they were pushing his organs over to one side. His stomach was squished, and he could only take 2 ounces of food at a time. His kidneys also put pressure on his diaphragm which hindered his breathing. At 2 1/2 months the decision was made to take one of his kidneys to make room for his organs. They took the lesser-functioning one. (25% vs. 75% functioning.)
He began eating more, gained weight and was well on his way. Markus’ biggest issue is his high blood pressure, which the kidneys regulate. He is on blood pressure medication and regularly monitored. His condition can also affect the liver – but so far, there is no damage to it in his case. Markus will need a kidney transplant because his remaining kidney will eventually fail. Today, at 10 months old, Markus’ one kidney is functioning at approximately 57%. In order to get him on the transplant list, Markus will have to weigh at least 15 kilos and his team wants him to be at least one year before needing to take the kidney. If they have to take the kidney earlier than a new kidney becoming available, Markus will have to be on at-home dialysis every night.
Joanne and Byron consider themselves lucky to have had Markus’ condition caught so early and to have such a great team of experts caring for their son. Joanne has met with a mother of another boy with the same condition who moved specifically to Calgary from Saudi Arabia to get care for their son.