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MEET OUR HEROES

Meet Our Hero: Carter

Carter is a determined young man. He tries out for sports teams at school and loves soccer and snowboarding. He was born with a congenital heart defect and has had six operations to date but his mom, Nicole, says he will never let his condition get in his way.

Carter was born on July 28, 2005 two-months premature and at just over 4lbs. Shortly after birth, he was diagnosed with a congenital heart defect, Tetralogy of Fallot (TOF), a condition that occurs when the heart doesn’t develop normally.

Carter was born on July 28, 2005 two-months premature and at just over 4lbs. Shortly after birth, he was diagnosed with a congenital heart defect, Tetralogy of Fallot (TOF), a condition that occurs when the heart doesn’t develop normally.TOF has four main features: an overriding aorta, a VSD (hole), pulmonary stenosis (narrowing of the pulmonary valve), and a thickened right ventricle.

TOF has four main features: an overriding aorta, a VSD (hole), pulmonary stenosis (narrowing of the pulmonary valve), and a thickened right ventricle.

Carter underwent his first open-heart surgery when he was 6 months old to repair the VSD and insert a stent in the left pulmonary artery. His subsequent 5 other procedures were to assist to clear the hypo-plastic left pulmonary stented artery and maintain good function of his left lung.

Nicole knew Carter was in safe hands at The Labatt Family Heart Centre at SickKids. It is one of the largest paediatric heart centres in the world and surgeons perform more than 85 per cent of paediatric cardiovascular surgeries in Ontario.

Carter received his last surgery in September 2014 and still comes to SickKids for monitoring.Future help is anticipated to action the pulmonary value and to replace the stent, sometime in his teens.

Future help is anticipated to action the pulmonary value and to replace the stent, sometime in his teens.

Carter has been fortunate to attend Camp Oki the past couple of years, Canada’s first (and only) summer camp for children with congenital heart disease. At Camp Oki, Carter feels really comfortable and grows in confidence while sharing this special week with kids who were just like him. He makes special friends and looks forward to future camp experiences.

Carter proves to those around him that anything is possible if you put your mind to it and it is okay to stumble when trying new things. When he snowboards in British Columbia his motto is ‘the higher the mountain, the better’.

He believes in challenging himself and his heart condition.

He will challenge TOF!

 

Meet Our Hero: Ryley

“SickKids has an amazing cardiac unit. There is always constant communication between families and staff. Everyone from the social workers, to the physiotherapist and doctors work together for the pursuit of excellence.” – Joanna, Ryley’s mom

Ryley and her family live in Woodstock, Ontario. When she was only two months old, she began vomiting and showed signs of laboured breathing. In September 2005, Ryley was diagnosed with dilated cardiomyopathy and transferred to SickKids.

Ryley and her family live in Woodstock, Ontario. When she was only two months old, she began vomiting and showed signs of laboured breathing. In September 2005, Ryley was diagnosed with dilated cardiomyopathy and transferred to SickKids.

Dilated cardiomyopathy occurs when disease-affected muscle fibres lead to enlargement of one or more chambers of the heart. This weakens the heart’s pumping ability. Ryley was given several medications to improve her heart function. When Ryley showed little improvement, doctors informed the family that a heart transplant was her only chance of survival.

Although heart disease is prevalent in Ryley’s family, the news was shocking. She was put on the organ transplant list. Each day that passed was crucial to Ryley, as her heart was quickly failing.

Ten days later, Ryley received a new heart. Part of the reason Ryley received her heart so quickly was because doctors at SickKids were able to transplant a heart that was not typically compatible with Ryley’s own blood type. SickKids pioneered research which led to the discovery that allows for heart transplantation from incompatible blood types into newborn babies because their immune systems are not mature enough to reject them.

Ryley recovered well from her transplant and was discharged 11 days later. Although she will be on anti-rejection medication for most of her life and may require another heart at some point, her parents could not be more grateful for the gift of life and for SickKids.

Today, more than a decade after transplant, her heart continues to be strong and healthy.  Ryley has competed in the Canadian Transplant Games 4 times and has won a total of 15 gold medals and 2 silvers at the games.  She also enjoys attending Camp Kivita, a week-long camp in Muskoka for kids with transplants. Ryley enjoys reading and drawing.  She takes swimming lessons and recreational gymnastics.  For the last 5 years on her birthday, Ryley has chosen to collect items to donate rather than receive gifts.  This has included SickKids treasure box program on 4D and to the Ronald McDonald House Family Room at SickKids.  She has also donated her hair 3 times for kids with cancer.  Ryley speaks to groups about organ donation by sharing her story of her heart transplant.  She will often do her school projects around transplantation, dilated cardiomyopathy and organ donation.  In 2015/2016 Ryley had her first hospital stays back at Sick Kids since her transplant in 2006 due to a virus.  Once again, the amazing staff got her back to her normal self with their wonderful care.  Ryley has a good and generous heart. Her parents are eternally grateful to her donor and SickKids for making it possible for her to be here.

 

Meet Our Hero: Evan

Child’s Condition: Congenital Heart Defect (tricuspid atresia)

Birthday: January 28, 2011

Evan has been a patient at the Hospital for Sick Children’s Labatt Family Heart Centre since he was a newborn. He has undergone three open-heart surgeries: two in 2011 and one in 2013.

Evan was born one month premature, weighing a little over four lbs. It was clear that he was in distress from moments after delivery. His colour was blue and he was having difficulty breathing on his own. He was whisked away to the hospital’s Neonatal Intensive Care Unit immediately. Within 24 hours of delivery he was transferred to SickKids. Evan’s parents, Ryan and Sandy followed Evan to SickKids where the cardiac team had already begun a series of diagnostic tests to be able to confirm the initial diagnosis of tricuspid atresia. They met Dr. Joel Kirsch and he quickly outlined exactly what the team was doing to save Evan’s life. They learned that Evan might need immediate surgery but that the plan was to try to stabilize him, manage his symptoms with medications in order to allow him to grow larger and stronger to be able to withstand his first major surgery. They also learned that the condition would be treated by a series of three, sequenced, open heart surgeries. In addition to Evan’s heart condition, Evan was born hypoglycemic and a 6cm tumour was discovered on his liver. This further complicated Evan’s hospital course and called for several medical teams to work together to formulate a plan for care.

Tricuspid atresia is a serious and rare condition (about 3% of all heart defects), in which the tricuspid valve has failed to develop, preventing blood from flowing from the right atrium to the right ventricle. The right ventricle also does not form fully and is too small. As a result of the defect, blood passes through a hole in the atrial septum from the right atrium to the left, and mixes with blood coming back from the lungs.

Evan stayed in the SickKids cardiac intensive care unit for about ten days at which time he was deemed stable enough to go home. His time at home was short-lived. Within two days his parents became alarmed by his appearance and behaviour and they called SickKids. They were told to get him to the nearest hospital as quickly as possible. Evan’s condition was rapidly deteriorating and he was transferred to SickKids. When he arrived he was in full cardiac arrest. Within two hours he was in the operating room having emergency open-heart surgery during which a BT shunt was placed. This shunt would help ease his symptoms and bridge him until he was strong enough for the next open heart surgery, the Glenn procedure.

Reviewed ByIn September 2011 he underwent the next of the staged repairs. During the surgery Evan suffered a stroke. Despite that setback his recovery from the surgery was relatively smooth and he was able to go home about eight days post-surgery.

In July 2013 Evan underwent his third open-heart surgery; the fontan procedure and once again suffered a stroke, this time a watershed stroke which was much more severe, causing him to lose 90% of the movement in his right hand and arm and 70% on his left side, leaving him with significant physical deficits. After recovering from the heart surgery he became a patient at Holland Bloorview Rehabilitation Hospital where he attended therapy to recover from the effects of the stroke.

Today, Evan is still monitored by the cardiology and neurology teams at SickKids and his progress has been strong, steady and remarkable. He has recovered from the effects of the strokes and is extremely active. His cognitive and language skills are well above-average. He is sociable, loves travel and gourmet food and is extremely athletic, recently receiving his yellow belt in Martial Arts and on his way to an orange belt.   Evan and his family love SickKids and are extremely grateful for the personalized care and excellent treatment that saved Evan’s life.

 

 

Meet Our Hero: Charolette

Child’s condition: Hypoplastic right heart syndrome

Birthday: December 30, 2005

Charolette was born on December 30, 2005. She was beautiful, and to her parents Jeff and Cindy she looked absolutely perfect. Sadly though, Charolette was born with a rare and complicated form of congenital heart disease called Hypoplastic Right Heart Syndrome. A condition in which the right side of the heart is severely underdeveloped. The Family was informed that in order for Charolette to survive she would require a minimum of three heart surgeries before her fourth birthday.

Charolette underwent her first surgery at The Hospital for Sick Children (SickKids) on January 3, 2006 at four days old. She recovered well and was able to go home soon after. Charolette spent six happy days at home with her parents and older sister Olivia before she was rushed back to SickKids. Charolette had developed a life threatening blood clot in her heart causing her oxygen levels to drop dangerously low. While back at SickKids she was also diagnosed with a bacterial blood infection. Charolette’s parents were advised she would need six weeks of IV antibiotics to treat the infection before she could be discharged again.

After several more setbacks, what started out as six weeks turned into over four months in the hospital. Charolette’s parents did their best to balance their time between each of their daughters. Jeff spent the work week in Waterloo with Olivia while Cindy was at the hospital with Charolette, then they would switch for the weekends. Each of them craving more time with each other and the daughter they were inevitably missing. The staff at SickKids recognized how difficult this was for the family and offered the family the use of two video phones to help bridge the distance. Cindy began reading bedtime stories to the girls each night. Even though Olivia was miles away she was able follow the story as she looked at the pictures in the book her mom was reading. The family treasured these moments spent together each night.

 

The family has grown to include a younger brother, Theo. Charolette, who is more often than not called Charlie by her friends and family, had her third surgery when she was two and recovered remarkably well. Charolette is considered by her doctor’s to be a “best case scenario”. She is healthy and active, plays sports, including ringette with the Waterloo Wildfire, softball, tennis and swimming.

Charlie visits SickKids annually and continues to amaze her team with how well she is doing. She attends Camp Oki, Canada’s first Summer Camp for children with congenital heart disease.

Charolette continues to be monitored by her exceptional care team at the SickKids Labatt Family Heart Centre.