Mark Horne and Michael Knipe had a dream. They wanted to start a family. After moving from South Africa to Canada six years ago, they were ready to realize that dream through surrogacy. They had everything planned – or so they thought.
Their son Joshua came into the world on March 29, 2017 – but not quite to plan. Their surrogate lived in another province and it had been arranged that, when the time came, she would deliver Joshua in Calgary. Joshua, however, came two months early and was delivered at a local hospital – nowhere near Mark and Michael.
From the moment he was born, it was clear that Joshua was having trouble breathing and he was intubated and airlifted to the NICU at BC Children’s Hospital in Vancouver.
“This is where our friends at Ronald McDonald House enter our story,” Michael says. “We barely packed more than a change of clothes and made our way to Calgary to catch a flight to Vancouver. As you can imagine we just had one of the most emotionally stressful days of our lives,” he explains, “but we were lucky enough to be welcomed into Ronald McDonald House on the grounds of the BC Children’s hospital that very day. On that day, it was wonderful to have a place to sleep and rest, knowing that we were only a short walk away from our precious son.”
This was the beginning of a story that would span two provinces and two Houses over the course of five months.
Doctors struggled with a diagnosis, and after two months in Vancouver, and quite a few scares, it turned out Joshua had a rare genetic mutation called PHOX-2B, leading to a condition called Congenital Central Hypoventilation Syndrome (CCHS for short). As a family physician, Mark had never heard of this (likely because there are only 1,500 cases worldwide.) Essentially, it means that Joshua “underbreathes.” Joshua’s brain can’t detect rising carbon dioxide levels in his body, which mostly affects him during sleep. Doctors determined that the best course of treatment for Joshua was a tracheostomy, or a breathing tube, which would require another two to four months in hospital.
Joshua was transferred to Alberta Children’s Hospital for his tracheostomy surgery, and the next step in their journey was a three-month stay at the Ronald McDonald House in Calgary.
“Once again Ronald McDonald House came to the rescue and became our home away from home,” says Michael. “Not only did we have a place to sleep, but we had a place for a time-out from the ward, a place to chat with other families going through the same unthinkable things with their kids, and a place to get home cooked meals.”
Joshua is now 18-months-old. He has regular doctor’s appointments and hasn’t been hospitalized since they Ronald McDonald House. He is only on his ventilator at night, while supervised by caregivers, and Mark & Michael hope that he will outgrow the need for his tracheostomy in several years.
It may have been a bumpy beginning for Mark, Michael and Joshua, but they are grateful for their happy ending: “Our dream of a family realized – with the most perfect little boy to call our son,” says Mark.