Kayden's Story




Tiny Light Kayden could be Lady Gaga’s youngest fan. He’s not even 3 years old yet, but he would make the superstar proud – behind the beautiful smile, this little boy has a thing for shoes. Every time he goes into a store and sees shoes, he wants a new pair!

Kayden has already defied the odds. He has a very rare complex congenital heart disease called Right Atrial Isomerism. His heart has five defects including a large hole between the chambers, and he was born with no spleen. Kayden was diagnosed at the 20 week ultrasound, heartbreaking news for first-time parents Jennifer and Steve.  They were told only two children a year in Canada are born with this condition. The survival rate is 50%.

Though doctors are unsure of Kayden’s future, he is healthy right now. At 8 days old, he underwent risky open-heart surgery. Just a week and a half later, his mom and dad took him home. “He has been through so much but always has a smile on his face.” Kayden is on daily medication for his heart and to fight infection due to having no spleen. He will need another open heart surgery within the next year.

This Tiny Light is too young to understand his heart issues, but his mom and dad tell him he has a special heart. Kayden isn’t letting anything slow him down – he loves playing outside, or having fun with his toy cars and tricycle.  “I hope he lives a good life no matter how long it may be.”

Written by Elaine Yong

Bentlee's Story




Bentlee is only a few months old, but this Tiny Light has given her parents the strength to look forward to the future.  She has also become her big brother’s best playmate, spending lots of time together with her favourite toys.

Diagnosed in utero at the 18 week ultrasound, parents Jamie and Chelsey were told their daughter has one of the most complex heart defects – Bentlee’s heart only has one ventricle instead of two and both her major arteries are switched.  It is very hard on the heart to get oxygenated blood to the whole body.  Her pulmonary artery is also narrowed, restricting blood flow into the lungs.

Bentlee will require a major heart surgery in the next month or two, and then another surgery when she is a toddler.  In between, there will be dozens of tests and appointments, and possibly a few smaller surgical procedures.  Doctors have no idea what a life span is for Bentlee.

Her parents weren’t sure they would be able to cope when they first found out about Bentlee’s condition, but this Tiny Light has brought the family even closer together.  “We just try to stay in the present and love her and treat her like any other normal baby.”
 
Written by Elaine Yong