|Hometown:||Prince Albert, SK|
Reason #813: “You never know when you will need the Children’s Hospital.”
One in 300,000. After a normal pregnancy and birth, Cole and Holly could’ve never imagined that their son Carter would be diagnosed with a rare disease that only one in 300,000 people are diagnosed with, but that was their reality. After giving birth to Carter in Prince Albert, SK, they received devastating news from their pediatrician.
“The next thing we know, the pediatrician is coming in telling us that he seems to have a skin condition and we were both in shock. She then said that the Jim Pattison Children’s Hospital (JPCH) is on their way with an ambulance to come and pick him up,” said Holly as she recalled her experience after giving birth to Carter.
Carter was transferred from Prince Albert to the Neonatal Intensive Care Unit (NICU) at JPCH just a mere two hours after his birth and was diagnosed with lamellar ichthyosis, a rare skin disease. When a child is born with lamellar ichthyosis, they are encased in a collodion membrane. Once that membrane has shed, the newborn is left with plate-like scales. Those affected by this disease, like Carter, are prone to dehydration, a decreased ability to sweat, increased sensitivity to heat, and ectropion eyes where Carter’s eyelids will turn outwards when the skin becomes too tight.
“He’s my whole life. Like I wake up and it’s Carter. Everything I do is for him,” explained Holly.
As first-time parents, seeing your whole life encased in an isolette in the NICU with nothing you can do is a life-changing experience. What Holly and Cole and many other parents in similar positions have to learn quickly is to trust.
“The children’s hospital has changed my life because I can trust. I can trust them with Carter and Carter is so fragile,” explained Holly.
Holly, Cole, and Carter travel to Saskatoon from Prince Albert for appointments every four to six months so that Carter can have his ears cleaned at JPCH, which involves Carter receiving general anesthesia and again, involves a lot of trust for the family.
“They just care, like they really do. They do what they say and they say what they’re going to do. It’s a tough thing to give your child to a stranger but you know they will treat him like he’s their own,” said Holly.
Though Carter’s condition will never go away, it was their time in the NICU at JPCH and the follow-ups with their team that will allow Carter to live life to the fullest. In order to manage Carter’s condition, he requires two lengthy baths of at least 40 minutes in a specialized tub every day, eye drops and ear drops at night to ensure they stay moisturized, and plenty of lotion. As Carter’s gotten older, Holly and Cole also need to monitor his temperature closely and he typically wears a cooling vest to keep him from overheating. He’s at a high risk for heat stroke, so the family avoids venturing out when it’s warmer than 22 °C.
But for Holly and Cole, it’s worth it.
“The children’s hospital saved his life because without it, we may not have him here with us today,” said Cole.