After being together for 10 years, Mark and Michael’s dream of having a child was finally coming true when they found a surrogate in B.C. to have their baby. Plans were made to have the surrogate come to Alberta for the birth of the child, but on March 29 she went into labour seven weeks ahead of schedule. Since she was in B.C. at the time, the baby was taken to the B.C. Children’s Hospital in Vancouver. With significant respiratory issues, it took two months before little Joshua could be transferred by air ambulance to the Alberta Children’s Hospital.
It was here it was discovered that Joshua had a rare genetic mutation (PHOX-2B) that affects breathing causing him to take shallow breaths (hypoventilate), especially during sleep, resulting in a shortage of oxygen and a buildup of carbon dioxide in the blood. As his breathing issues persisted, it became clear the best option for Joshua would be to have tracheostomy (a surgically placed breathing tube inserted through his neck into his windpipe). While Michael and Mark were hesitant at first, the trach meant they could see their son’s face unencumbered for the first time and his facial features could develop more naturally.
Once the tracheostomy was in place and Joshua was stabilized, Michael and Mark wanted to get their little boy home. Caring for a child with a trach requires specialized training. The donor-funded KidSIM Lab provided comprehensive training for Mark and Michael to learn everything they needed to know. Even though Mark is a family physician, both parents benefited from the training to do emergency trach changes, suction, etc. using a high-fidelity mannequin equipped with a trach. In record time, Joshua was able to go home to Lethbridge – in fact, he was the youngest baby ever to be discharged with a trach!
While it’s hoped the trach can be removed when he’s six or seven, he will likely need breathing support (like C-pap) at night for his entire life. Due to his genetic condition, he’s also at high risk to develop a form of cancer called Neuroblastoma so Joshua is at the hospital every three months for test and scans to monitor for tumours.
Michael and Mark are quick to say that the Trach Training Program was a game-changer for them. It gave them the confidence they needed to manage Joshua’s care safely and get him home. They are incredibly grateful that the community has made a program like this possible for parents.
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