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

Lukas' Story

Images Captured by Liz Bradley of elizabeth&jane photography 

Meet Tiny Light Lukas. This Tiny Light loves playing with his cars, watching the movie Cars and playing with his puppy. He really enjoys dancing and singing along with his favorite TV shows and country music.

Lukas was born with Tetralogy of Fallot, a congenital heart defect. He was diagnosed at just one week old. When Lukas was born he had a heart murmur that was loud enough for the doctors and nurses to hear with just a stethoscope. Lukas had a very large hole in the walls between the right and left ventricles of his heart. Fortunately, Lukas has only needed one surgery to date, when he was six months old. Lukas’ recovery was remarkable and just six days after the surgery he was able to go home with no medication except Advil for pain, which he didn’t even really need!

“We were terrified,” Lukas’ mom says. “Without surgery, Tetralogy can be fatal. Even with surgery there were no guarantees.” Lukas didn’t walk until he was 23 months old and has had some other developmental delays. Even though Lukas cannot carry on a conversation like an average child his age, he can answer questions and has learned so much. He can identify all his shapes, colours, numbers and letters, and is even spelling some words now. 

His parents’ biggest fear is that Lukas will need to undergo more surgeries and possibly be diagnosed with Autism Spectrum Disorder, which his older brother has been diagnosed with. However, his family hopes that “Lukas will get to live his dreams and make them a reality. Now that his heart is fixed he could do anything that a normal kid could do.” 

Story Written by Kelsey Walker

Mason's Story

Memories Captured by Kristy Macleod Photography

Meet Mason.  This Tiny Light loves playing outside, going for wagon rides with his Papa, playing with monster trucks, playing on his tablet, building with mega blocks, and playing with his train set. 

Tiny Light Mason’s story started before he was even born.  At his 20 week ultrasound, the radiologist saw a problem with his heart. After the heart issue was discovered, his family drove five hours to Halifax for an echo, where it was confirmed there was definitely a problem with Mason’s heart. The sound echo determined that Mason had an Interrupted Aortic Arch, a condition of the heart where there is a break in the aorta, leaving the lower limbs without the necessary supply of oxygenated blood.  This condition is fatal without surgical correction. Mason would need surgery within the first week of his life.

After this Tiny Light was born, he spent a few short minutes with his Mom and Dad before being taken away to the PICU where he underwent more testing and more issues were found.  In addition to the IAA, he also had two holes in his heart, one on the top (ASD a hole in between the two upper chambers of his heart) and one on the bottom (VSD a hole between the two lower chambers of his heart).  Mason stayed in the PICU until he had open heart surgery at just six days old.  His surgical team was successful at fixing all three of his heart defects! Mason remained in hospital for 22 days, and made an amazing recovery. Later, at nine-and-a-half months old, Mason went for his second open heart surgery; just three days later he started to crawl!

Mason could potentially have a shorter lifespan, but his life will be his own. So far Mason has not been limited by his condition, and his family hopes he never will be. He is clear to play sports and be active as much as any other child, and his family encourages him to do so. All his family wants for him is happiness; they hope that he will pursue a fulfilling career that he will enjoy and that he will find love. His family’s biggest fear is that they may outlive him, but they, of course, hope that will not the case.  This journey has taught his family many things, but his mom shares the following words with families going through similar situations: “You will learn more about living and loving than you could ever imagine.” Tiny Light Mason is a true fighter and has faced many challenges in the beginning of his life, challenges that many of us cannot even imagine. 

Story written by Kelsey Walker
Edited by Adelle Munk

Odin's Story

Memories Captured by Affordable Child Photography ​

Meet Tiny Light Odin. He is a mirror twin to brother Griffen. He also has an older brother, Kingston, with whom he loves to play peek-a-boo!

At 15 weeks of pregnancy, Odin’s mother was kicked in her stomach and was sent to the emergency room with the very real possibility of losing her babies. It was discovered at this time that Odin would have several congenital heart defects. Once born, the full extent of Odin’s condition was able to be determined and he was diagnosed with heterotaxy (RAI), unbalanced atrioventricular septal defect, transposition of the great arteries, double outlet right ventricle, anterior aorta, pulmonary stenosis, univentricular heart, asplenia, laryngomalacia, non-rotational bowels and midline heart.

This Tiny Light has undergone two open-heart surgeries and continues to persevere. He has gained weight since his last surgery and is able to eat by mouth after being fed via an NG tube. This will allow him to be stronger for his third surgery, which is scheduled in a year’s time.

Odin’s parents state that the hardest part of the journey has been seeing the pain their Tiny Light has had to endure. “Not being able to push away the doctors and nurses and take off all the tubes and wires...” has been difficult. As they say, “Never give up hope on how strong your child could be...appreciate every little thing life has to offer because...they will teach you hope.”

Story by Stephanie Bond