Sevanna's Story

Memories Captured by Eye 58 Photography

Meet Tiny Light Sevanna. This sweet, caring six year old is adored by everyone who knows her. She loves to dance and sing and is a whiz at remembering song lyrics. She also enjoys going to school, swimming, colouring and playing outside with her siblings and neighbourhood friends. Despite the fact that she has been through so much already, spending nearly half of her life in the hospital, she continues to demonstrate her incredible fighting spirit and love for life. 

During a routine ultrasound, Sevanna's mother, Ricki, was told that she would be having a baby girl, but that something was wrong with her heart. When Sevanna was born, she was diagnosed with multiple heart defects: only one ventricle with a severe VSD (ventricular septal defect), pulmonary atresia, an ASD (atrial septal defect), a PDA (patent ductus arteriosus), L-TGA (left-side transposition of the great arteries) and a missing mitral valve. Sevanna’s lungs are also reversed (situs ambiguus) and she was born with no connection from her aortic arch to her lungs. What is unique about Sevanna's case is the positioning of her heart. It sits to the right at a severely tipped angle and is also upside down and backwards. 

She’s the only child in North America diagnosed with both hypoplastic left and right heart syndrome because the walls in her heart chambers have the characteristics of both sides (smooth and ripply walls). Her official diagnosis is “dual indeterminate hypoplastic left and right heart syndrome.” Unfortunately, there were also many complications during her heart surgeries, resulting in vision loss (she is blind in her left eye), kidney damage and moderate brain injury. She’s been diagnosed with epilepsy and ADHD as well.

Sevanna's health has been stable for over a year now, though she continues to be seen by many doctors and specialists. Within the next couple of years, she’ll require a valve replacement and, in her teens or early 20s, she’ll receive a heart transplant. For now, Sevanna will continue pursuing her dream of becoming a singer and dancer, singing with her mom daily and taking ballet lessons. 

Story written by Emily Harrison

Elizabeth's Story

Tiny Light Elizabeth is a spunky little three year old who has a smile for everyone she meets. Her determination and feisty spirit has allowed her to already overcome so many obstacles. Elizabeth loves reading, music and dancing. She has an incredible memory and learns things quickly.  Elizabeth is also quite opinionated and independent, which often results in hilarious clothing combinations and interesting arguments, including why she can't walk her imaginary friend home when she's supposed to be going to bed. Elizabeth often tells people her name is “Princess” and her mother says, “she embodies that personality type fully!”

Following a routine ultrasound, Elizabeth's parents were told that their daughter had a complex, congenital heart defect. She was born with a hypoplastic (small and underdeveloped) right ventricle, tricuspid atresia (a missing tricuspid valve) and a ventricular septal defect (a defect in the wall dividing the left and right ventricles).  

At 3.5 months, Elizabeth underwent her first open heart surgery to have the first of a two-step repair and in March of this year, she received the second and final step. Some complications resulted in a three-month hospital stay, but now Elizabeth is home and healthy. She will not require additional surgery until her teens or early twenties, when she will receive a heart transplant.

While the journey has been difficult for Elizabeth's family, they have learned to be grateful for every moment they have with her. Her mother says: “She has helped me find joy in simple things, she brings light and happiness to all situations. Elizabeth's life is an awesome testimony of God's power and grace and being able to share that with others is a privilege.”

Story by Emily Harrison