Most kids when they’re six years old are having sleepovers with their friends, playing sports, and being fearless.  

Well, six-year-old Oakley Gustafson is being fearless in another way, as he has been in and out of the hospital since he was born with a rare birth condition called Congenital Diaphragmatic Hernia.  

“What this means is he was born without a left diaphragm so his stomach organs were up in his chest and didn’t give his lungs room to grow,” says Oakley’s mother Lindee Holmes. “He has a smaller than normal right lung and no left lung. He’s on daily oxygen, CPAP, and a feeding tube.” 

His mother Lindee Holmes says that this condition is rarer than spina bifida. To date, Oakley has had three re-herniations. 

The latest one was on Sept. 20, which resulted in him having to be airlifted to the Stollery Children’s Hospital in Edmonton. 

“All of his intestines were up in his chest, so he was in a lot of pain and he couldn’t breathe.” 

Holmes said that since he arrived at the hospital, he has undergone two major surgeries.  

“He had surgery three hours after arriving and his blood pressure plummeted, so they had to stop after four hours. Two days later they went back in for another five-hour surgery to repair his diaphragm, and thankfully they were able to find enough skin to sew a new left diaphragm to and remove a severe bowel blockage.” 

She adds that on Monday Oakey had a scare as they thought he re-herniated again, but found out that it was just air above his diaphragm, which they are leaving in for the time being as it’s acting as a plug and keeping his stomach organs in place.  

Oakley’s current state is he’s awake and in very good spirits, which is a very good thing Holmes says. Holmes says that he is excited about his birthday, which is on Saturday and he will turn seven years old.  

Due to his rare condition, Oakley has had six surgeries and his pulmonary hypertension poses a potential risk every time.  

“To be completely honest, I’ve been doing this for seven years now, so I kind of stay numb through it right now. It’s like running in robot mode. You never have emotions in front of him, but sometimes I break down.” 

If everything goes to plan and there are no surprises, the doctors say he could be able to return to Moose Jaw in a couple of weeks.  

When Oakley was born, he spent his first 203 days at the Stollery Children’s Hospital in Edmonton, after the GORE-TEX mesh that was put into his diaphragm at birth broke. The GORE-TEX mesh is used to help repair soft tissue damage with minimal complications.  

In almost seven years, Oakley has spent over 350 days in the hospital due to his condition.  

Every four months the family has to travel to the children’s hospital in Edmonton for pulmonary hypertension appointments. Pulmonary hypertension is when the pressure in the blood vessels leading from the heart to the lungs is too high. He has to undergo several exams to check for it.  

On Monday, Moose Jaw resident Katie Keeler, out of the goodness of her heart started a GoFundMe page for Oakley and the Gustafson family to help with day-to-day costs such as bills and living expenses in Edmonton.  

“Katie has been so amazing!” 

The goal has been set to $20,000 and as of the time of publishing the GoFundMe page has raised $1,725 in just one day. 

“I and my husband Jamie and our whole family are so thankful. Right now, I’m not at home, I’m not working. My husband is trying to cover everything on his own. It’s been amazing that the community has come out and helped us so much already.” 

A link to the GoFundMe page can be found HERE. 

A Facebook page has also been set up to allow people to follow along with his recovery called Hope For Oakley.