Fox's Story

Images captured by Anna Jones Photography

www.annajones.ca

Meet Tiny Light Fox. This little guy is happiest when listening to music or spending time in his bouncy chair. Though he is still so young, he has already demonstrated immense strength and bravery.

Twenty-two weeks into pregnancy, Fox’s parents were told that their son had a serious heart defect. He was diagnosed with transposition of the great vessels, DORV (double outlet right ventricle), coarctation of the aorta, VSD (ventricular septal defect) and an ASD (atrial septal defect). When he was born, the umbilical cord was wrapped around his neck twice and he was blue. He was immediately given treatment to stabilize him until doctors could fix his heart. At just five days old, Fox was scheduled for a four to six hour surgery but ended up in there for 11 hours. There were some major complications, but Fox continued to fight and he pulled through. Complications from the surgery included collapsed lungs, pneumonia, chylothorax, blood infection, pulmonary hypertension, pulmonary stenosis and arterial flutters. Fox was in the cardiac care unit for four and a half weeks but made it home just in time for Christmas.

Fox will face more surgeries in his future but his parents remain positive. As his mother says, “I'm so proud of my brave little man ... To see my son struggle and fight for his life has taught me a lot about what's worth fighting for. We don't know what the future holds for Fox but we know he will continue to fight.”

Story by Emily Harrison

Sean's Story

Images Captured by Studio 1948

Meet Tiny Light Sean. This 14 year old boy loves video games and playing his electric bass guitar. He knows a lot about cars, is very good with computers, and is a talented artist. His mother also describes him as very mature for his age, as he grew up surrounded by mainly adults (doctors, counselors, and family members). Though he sometimes comes off as a tough guy, he has a heart of gold and will do anything for those he loves.

Sean was born with Congenital Heart Disease (multi-branch pulmonary artery stenosis) and low blood sugar levels. Shortly after his birth, he also developed acid reflux disorder, asthma, bronchitis, and allergies. When Sean started school, his mother noticed that he was having difficulties. Testing showed a learning disability for comprehension and processing. On top of all this, Sean also developed anxiety and depression following two heart surgeries last year, which left him with an aneurism in his chest.

Sean’s mother worries about her son’s health and the fact that he is bullied; however, she is inspired by Sean’s strength and remains positive. “The most amazing thing about all that has happened is that Sean is here, and he has never given up. He is a true fighter and I love him with all my heart and soul.”

Story by Emily Harrison

Brooke's Story

Images Captured By Scuffed Boots Photography

Meet one-year-old Brooke.  This Tiny Light loves reading stories and loves her cats.  She loves being chased and tickled!  She has a crazy amount of energy, which is infectious to anyone and everyone around her!  Brooke is so sweet and has been a strong girl throughout her journey!

Brooke was born with Congenital Heart Disease.  She had two holes in her heart (AVSD), pulmonary stenosis, parachute mitral valve stenosis and tachycardia (a racing heart).  She underwent heart surgery at only three months old to repair the two holes.  As if being new parents is not overwhelming enough, Brooke's parents were quickly learning the ins and outs of the medical system.

Brooke's parents wish for a future with no further heart surgeries, something that is uncertain at this time.  They trust the medical system and are provided huge amounts of comfort by this trust; because of this system, they still have their daughter.  While the thought of possible future surgeries are a constant worry, Brooke's parents do not let it get them down.  "We just have to look at her with her ball of energy, and she reminds us to live in the present!"

Story By Angela Stephen- Dewhurst

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

Vienna's Story

Images Captured by Baotran Pham Photography 

Little Vienna may be only 4 years old, but to her parents and big sister, this Tiny Light has opened up a whole new world of joy and wonder. 


Diagnosed with Atrioventricular septal defect (two holes in her heart) and Down syndrome while in utero, Jennifer and Joel were determined to learn as much as they could about their baby girl’s conditions before she was born.  Since then, Vienna has had numerous hospitalizations, dozens of doctors appointments, open heart surgery, and hours of therapy.  But that hasn’t been the toughest part of the journey for this family.  They have faced an uphill battle with friends and family who haven’t known how to cope with Vienna’s diagnoses. 


Along the way, this beautiful girl has constantly amazed her parents.  “I have never seen a child enjoy life and the little things as much as Vienna.”  Her eyes light up when mom and dad sing “Itsy Bitsy Spider”.  She cheers for her big sister’s soccer team by shouting “Go, go, go!” Even after a long day at the hospital, Vienna is full of laughter.  And she loves snuggling into mom’s shoulder at night. 


Her parents have so many dreams for Vienna.  “If you focus your energy on what your child is not doing, you may miss out on something amazing your child is doing currently.” And no matter what path their daughter chooses, their most ardent hope is she will be surrounded by genuine caring people who accept her. 


Written by Elaine Yong

Elizabeth's Story

          

Images Captured by Dawn Melanson Photography

Mother to four healthy boys, it came as a huge shock to Elizabeth’s parents when their daughter was diagnosed with congenital heart disease.  Fear replaced anticipation as Elizabeth’s mom spent the next four months wondering if every kick she felt might be the last.

When Elizabeth was just three days old, her parents helplessly gave her away to a surgeon who initiated the process of “fixing her heart.”  It is hard to imagine the pain of giving birth, only to have your child immediately taken away and put on drugs in preparation for life threatening surgery.  She was just minutes old and already fighting to live.  It is sheer agony, waiting when you should be holding, fearing when you should be ecstatic.  One of the most difficult things they have had to endure was sitting beside Elizabeth’s bedside, watching her fight to live after her first surgery.  After enduring a total of 56 days in the hospital, they were finally able to bring her home.

At just a teeny six pounds, she overcame 21 medication pumps, five IV's at a time, and an arrhythmia that made her heart beat at 240 for three hours.  Despite all the challenges she has faced, she is happy and thriving.  “She's so happy and strong willed.  We know that if she can get through that, we can get through anything.”  Elizabeth “likes to jump in her exersaucer, have tea parties with her brother, watch her brothers play, sit on the floor while playing with her toys, and be carried around by her daddy.”

She has taught her mom about the fragility of life and how to truly savour each moment with the ones you love.  Instead of focusing on the scary things, they chose to focus on Elizabeth.  “There are so many things that could go wrong with her … if I sat and thought about them, I wouldn't be able to enjoy her.”

“The road is long and hard, but worth it when you see them smile at you and begin to babble.   You can learn a lot from your braveheart, and a lot about yourself in the process.” 

Story by Tara Anderson