22 Mar The VACTERL Adventures of Kait and Jett
At 24 weeks pregnant, Kendall found out that her little baby boy (to be named Jett) had VACTERL syndrome, an acronym of birth defects. Worried about her sons future, Kendall went to the internet and social media to find more information. After searching Google, Wikipedia, and Facebook support groups, she decided to look up the hashtag #VACTERL on Instagram, and that’s where she found a picture of ME! (The power of social media!)
For those who have read #myostomystory blog, you know that I was diagnosed with VACTERL at a young age, resulting in multiple ostomies due to my complicated birth defects.
From California to Toronto, Kendall and I became modern day pen-pals. She and Jett’s dad Justin kept me updated with ultrasound photos and doctor results and we become so close that I felt like part of their family. We had formed a bond of trust and friendship I knew would last forever.
When I asked Kendall about our relationship, she said these words that made me feel so honoured to be a part of Jett’s team:
“When doctors had told us all the possibilities of problems Jett was going to have due to VACTERL it made me feel depressed and fearful of the future. Seeing Kait’s pictures of her everyday life was my inspiration in the toughest of times. It would instantly pick me up when I was feeling down. It gave me hope and a sense of confidence that everything was going to be okay. Jett would have obstacles to overcome of course, but none of that would stop him from enjoying his life.”
On November 15 2015, at just 2 pounds and 14 ounces, and 16 inches long, Jett made his grand entrance into the world! He was born with an Imperforated anus and went into surgery for his colostomy bag immediately after birth (just like me!).
As he grew, he became stronger! Just over a year after his first surgery, the doctors were able to create a passage way for stool and on January 13th, 2017, Jett took his first poop! 💩
This called for a celebration, so on February 19th, I hopped on a jet to meet Jett! I spent a week in California getting to know Kendall, Justin and Jett (even though it felt like I had known Kendall forever). Don’t we look like BFFL’s?!
Throughout the week I was able to share the struggles and triumphs of living life with VACTERL and ostomies. By staying at their house, I could show them a day in the life of Kaitlyn – both the medical and the adventurous sides of me. Oh, and of course I was a hardcore tourist with an amazing tour guide, so I had to take a ton of photos (hundreds, to be honest.)
Each day was a new adventure, from La Jolla Beach to Hollywood and Disney; the trip was a week of memories I will never forget. The morning of my last day there, Jett was having his bottle, and began to fall asleep in my arms. I sat there with tears running down my face, thinking about all that we have both been through. The connection between us can not be put into words. Watching Jett grow into the little man he is has been such a great honor, I know he’s going to live life to the fullest and never let VACTERL or his ostomies limit him.
BELIEVE.
elizabeth hodgson
Posted at 19:04h, 27 MarchAbsolutely wonderful you found each other. ♡ you not only will help him, but truly give hope to his parents.
Audrey Verhoeve
Posted at 05:03h, 27 JuneIncredible story and so simular to our journey so far! Our boy, Born 30th November 2015, has the same VACTERL syndrome.
How I wish we would have had a person to share the journey with, beautiful!