Jillian and Aaron Colbert are busy parents of three little children with Jack being the youngest at six-and-a-half-months-old. Jack was born with Down syndrome and in a few short months, the couple has educated themselves about a complex situation that’s part genetics, part health care and part social acceptance.
At this point, the little boy’s health conditions associated with the chromosome abnormality are causing the greatest worry. He was hospitalized for three-and-a-half weeks after birth and has slowly been weaned from weekly doctor appointments.
“If Jack had been my first, I probably would have gone crazy not knowing what to do,” said Jillian.
He was born with an imperforate anus and a congenital heart defect, despite showing no signs of this during ultrasound. Jack has had the first of three surgeries to help mend his bowel defect and on August 21, he had open-heart surgery. Now that he has regained his strength, he has two more bowel surgeries upcoming.
Having two children already has also helped the parents know to trust their instincts despite some medical advice coming from a different age.
“Jack wanted to start solids — he was noticing food,” said Jillian. They were advised to wait by doctors because people with Down syndrome can sometimes choke or inhale their food. They were told in a year’s time, he would be enrolled in a program for people with eating disorders. Said Aaron slyly, “So to prevent him from choking they’re going to give him an eating disorder.”
Jillian is also successfully breastfeeding Jack despite being told this would be difficult.
These are just a couple examples of the couple’s experiences with a stigma that still exists — even among medical experts. Jillian and Aaron say they understand why this vein of thinking is still out there — lack of knowledge.
“When Jack was born we both kind of knew there was something different,” said Jillian. “I kind of knew it was Down syndrome. I don’t know how because I didn’t know what it was except for all the misconceptions I’d heard.”
The couple didn’t do any genetic testing during their pregnancy because Jillian is 24 and risk of occurrence increases with age.
“And we both agreed that it wouldn’t make a difference to us anyway,” said Jillian.
But when Jack was born, the couple struggled after learning he had trisomy 21. They knew little of what they know now.
“One of my biggest fears when I had Jack was what is everyone else going to say to me,” said Jillian. “It was a new reality I had no clue about.”
Education is the key to ridding the world of a stigma that is slowly fading, said Jillian.
“Right now the stigma is being lifted. People with Down syndrome are going to finally have their chance to shine as an equal,” she said on a Facebook page she’s using to chronicle their journey. “It’s about time that we stop judging and start loving!!!”
They are sharing their personal stories with the hope of raising awareness about Down syndrome during a week intended to do just that.
November 1 to 7 is Down syndrome awareness week. Also known as trisomy 21, it is a genetic disorder, occurring at conception, caused by the presence of all, or part of a third copy, of chromosome 21.
In the last 2.5 years, six children with Down syndrome have been born in Nelson which is far more than statistics would predict. One in 800 live births is more the norm.
Only ten years ago, people with trisomy 21 were instituted. Aaron explained textbooks describe the potential problems that come with Down syndrome — if it’s left “untreated.”
“Any kid that if you treated them like there was something wrong, there would be a big difference,” agreed Jillian.
Instead of “going by the book,” exploring online resources and parent blogs has been a great support to the parents. They find the community of Nelson great for inclusion and Aaron said that’s key in helping people with Down syndrome “reach their full potential.”
“They have a large gift to give,” said Aaron.
Some of the most touching moments the family has experienced come from the acceptance between siblings.
“They know all about chromosomes,” said Aaron of their two older children. “Seeing the empathy and the love and the understanding is just beautiful.”
There are some things Jillian and Aaron still don’t understand and struggle with when it comes to Jack’s health. But his development from baby to child has been positive.
“Jack’s doing really well. He’s blowing all the doctors away,” said Jillian. “People with Down syndrome can do everything everyone else does.”
Jack has another big surgery coming up on November 18. To help with the expenses of travel to Vancouver every two weeks for the next six months, medical supplies and to make up for lost wages, the family is raising funds.
‘This is Jack silent Auction’ is being hosted on Facebook with bidding starting Sunday and continuing until Tuesday afternoon. There is also an auction being held at Expressions Café at 554 Ward Street on Tuesday from 11 a.m. until 3:30 p.m.
‘This is Jack’ bracelet’s are also for sale at Natural Choice Pharmacy Remedy’s RX on Nelson on Baker Street. Contact Jack and his family: at firstname.lastname@example.org or by phone at 250-551-0509.
Follow Jack’s story on Facebook at www.facebook.com/liljackalope