The Story of Baby Brayden

Any parent can tell you what a challenge it is raising children. It’s expensive, it is messy it ‘s noisey. The crying, the fighting, the whining. The endless laundry, cooking and cleaning.

The next thing a parent will say is that it is unbelievably rewarding.  Like making a child smile through tears. And calming their fears at bedtime that there are no monsters under the bed.  And the unconditional love you get from kids through finger paint gifts and hugs and kisses.

But when you are the parent of a medically fragile  child, love is required tenfold.

Brayden Christopher was born 2 years ago to Darren “Z “Pratt and Ramona Lerat. Their third child, it seemed to be a normal pregnancy until Ramona was at 6 months. She says she started retaining fluid. It cleared up a week later and everything was fine, until she gave birth.

“He was diagnosed with Craniosynotosis which is early fusion of the skull bones. In the future, he may need corrective surgery. Brayden’s heart is also situated more on his right side with two small holes which are referred to as Ventricular Septal Defects,” says Ramona.

Brayden’s facial features are little different as well  – dysmorphic ears and his eyes are a little further apart. These features are similar to children born with Down’s Syndrome. But Ramona says it’s not Down’s because he’s been tested and the  DNA results are normal. “He’s just a little  different and looks fine to  me.”

Brayden’s first stay in the hospital was 3-months after Ramona discovered he was having seizures.

“He would lift up his little arms  and this  would come in a cluster. I wasn’t sure what was going on until doctor’s diagnosed him with infantile spasms and prescribed medication.”

All the things we take for granted in our own children, like sleeping and eating is different for little Brayden. He doesn’t sleep because he has trouble breathing on his own and has to be hooked up to a machine every night.

“The by-pap machine is a mask that goes over his nose and relieves the secretions that build up. We kinda have to sneak it on him at night as soon as we know he’s asleep.”

Brayden’s nutritional needs are different as well. Ramona says when she started feeding him cereal he didn’t know how to swallow it. The doctor’s discovered he was getting the cereal in his lungs. So now he’s fed through a G -tube which requires an operation that was risky for a medically fragile child.

“Brayden recuperates differently. He’s a high risk because he doesn’t do well under sedation.”

With all these challenges, most couples would break under the strain.  ut both Darren and Ramona say that Brayden has brought them closer together.

“When he was born, it was hard to understand,“ says Ramona.

“Like why our baby?”

“But I’m thankful for Darren because he says it doesn’t matter”.

Darren is an artist-everything from painting to  carving deer antlers.  His tremendous talent has helped the family  fundraise for when the family  has had to travel to Edmonton or  Saskatoon  to see Brayden’s specialists.

“All of Brayden’s medical care has accumulated  expenses for our family. Our families and friends continue to be supportive and help with fundraising to help out with those incurred costs associated with Brayden’s medical needs and supplies.”

Even though Darren is a member of  the George Gordon First Nation and  Ramona is from Coweessess First Nation, Brayden is eligible for health benefits through Indian Health Benefits.  But not all of his medication is covered, and the family has had to seek  out advocacy from their respective leadership for help.

“It can take weeks to get approval for some of the medication that Brayden needs now. Our Chief and council have helped us out to get approval faster,” says Darren.

Brayden’s fight has taught this couple to stand up and question a health system that people often find intimidating.

Ramona says, “We have to say to the doctors and nurses, we know what works best for him , try this. I also have to stand up for Brayden when they continually want to test him and poke and prod. I have to tell them when it’s enough.”

“Health care professionals need to be open-minded and assess all possibilities; even if it is standing back and listening to a mother or father’s concerns.”

The family continues to watch as Braydengrows and develops. He now wears glasses to help with his vision.

Even these tough parents need a break and Brayden needs to socialize. So he attends a Daycare facility – Hope’s Home – that provides care for medically fragile children, as well as typically normal children. It is a place where “kids can be kids” no matter their medical needs.

Regina-Qu’Appelle Health Region also provides the family with Home Care five nights a week.

In Ramona’s own words, “With the continued support we receive, we as a Family can continue to lead a normal life regardless of Brayden’s medical condition. Brayden continues to show us his strength and perseverance to overcome his illnesses. He has been truly a blessing to our family and we will continue to cherish each and every day with his infectious laugh and smile!”

– Miranda Hanus. RezXSouth Managing Editor