Moose Jaw mom shares the tears and triumphs of raising a baby with Down syndrome

A Moose Jaw, Sask., mother has set up a Facebook group to chronicle the struggles and victories of raising a baby with Down syndrome in hopes that others may find inspiration.

"If somebody else happened to come across his Facebook page that is going through the same thing, maybe it can help them," Sarah Koch said in an interview with CBC Radio's Saskatoon Morning.

Everything was perfect 

The journey began back in April, when Koch's family was celebrating the arrival of baby Julian. He was their fifth child, and everything was perfect until one day when Sarah was busy in the kitchen preparing a special birthday meal for her husband.  

"Julian kind of made this weird sound, so I went to check on him and he had turned blue," she said.

That led to a quick trip to the hospital and a diagnosis of bronchitis. While in care, a doctor detected a heart murmur, and further tests suggested Julian would need open heart surgery. As devastating as that news might be for a parent, it was also determined the baby boy had Down syndrome.   

"I cried," recalled Koch.

"It was hard for me. No one wants to hear that their child is, for lack of better words, different."

Screening a good idea, says Koch

Koch now wishes she had said yes to the suggestion of screening for health problems during her pregnancy.

"It's not really a thought that crosses your mind, and at the time you think OK, well if he has Down syndrome or whatever, it's going to be fine, it is what it is," she said.

"I had four other kids that were perfectly fine."

Had screening determined her baby had Down syndrome, Koch said it would not have changed her mind about following through with her pregnancy, but it would have given her more time to prepare psychologically.

Today, the family is learning how to best meet their son's needs, all the while sharing his story on social media so that friends, family and anyone who is interested can follow Julian's journey.

Sarah Koch said she is learning to slow down, and be more mindful.   

"The small things, like just listening to him giggle or watching him learn, it's a small thing to see him smile, but now I am learning that his smile is coming from somewhere, and sometimes you just need to stop and smile back."