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'It steals so much': These are the faces of congenital heart disease

Congenital heart disease, or CHD, affects 40,000 children born each year. Here's what it looks like.
by / / Source: TODAY Contributor

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Congenital heart disease affects approximately 40,000 children born each year.

After parents and children affected by CHD shared their stories in a TODAY original video, TODAY Parents Facebook followers shared images of their own children who are being treated for — or have died from — CHD.

It's a world of tubes and oxygen, surgeries and strong fighters. Here are photos from the parents of these little heart warriors.

"This is 6-year-old Gael. He is a CHD warrior who has Tetralogy of Fallot and pulmonary atresia," shared Saul Solano. "He has had four surgeries and faces more in the future, but for now he is enjoying a break from the hospital by shredding the pavement and going to TaeKwonDo. He is our little skateboarding ninja."
"This is 6-year-old Gael. He is a CHD warrior who has Tetralogy of Fallot and pulmonary atresia," shared Saul Solano. "He has had four surgeries and faces more in the future, but for now he is enjoying a break from the hospital by shredding the pavement and going to TaeKwonDo. He is our little skateboarding ninja."Saul Solano Jr./Facebook
"Xavier. Hypoplastic left heart, pace maker, cardiac arrest resulting in a brain injury, quadriplegic and the coolest kid on the planet," wrote Jackie Lynn.
"Xavier. Hypoplastic left heart, pace maker, cardiac arrest resulting in a brain injury, quadriplegic and the coolest kid on the planet," wrote Jackie Lynn.Jackie Lynn/Facebook
"My 8-week-old warrior queen, Charli Leventhal," said Monica Leventhal. "Ventricular septal defect repair just this past Wednesday. Crushing it here at Children's Hospital of Philadelphia! Prayers to all of your warriors."
"My 8-week-old warrior queen, Charli Leventhal," said Monica Leventhal. "Ventricular septal defect repair just this past Wednesday. Crushing it here at Children's Hospital of Philadelphia! Prayers to all of your warriors."Monica Leventhal/Facebook
"This is Connor. Eight months," said Alicia Blalock French. "He had his first surgery in September at 3 months of age. He's diagnosed with double outlet right ventricle and mitral valve deformity."
"This is Connor. Eight months," said Alicia Blalock French. "He had his first surgery in September at 3 months of age. He's diagnosed with double outlet right ventricle and mitral valve deformity."Alicia Blalock French/Facebook
"This is our son Thaxton who has hypoplastic left heart syndrome. We found out at 34 weeks that he is one of the children who is not a candidate for heart surgery or heart transplant," wrote Caitlin Baudendistel. "CHD is real and it steals so much. Thaxton's estimated due date is March 8, and we will be blessed to have him here on earth as long as God allows, mere hours or days."
"This is our son Thaxton who has hypoplastic left heart syndrome. We found out at 34 weeks that he is one of the children who is not a candidate for heart surgery or heart transplant," wrote Caitlin Baudendistel. "CHD is real and it steals so much. Thaxton's estimated due date is March 8, and we will be blessed to have him here on earth as long as God allows, mere hours or days."Caitlin Baudendistel/Facebook
"My name is Sarah Jane and I was born with transposition of the great vessels," wrote Sarah Jane Burfield. "I am now 21 and have just graduated from nursing school. I am so thankful for the awareness for CHD children."
"My name is Sarah Jane and I was born with transposition of the great vessels," wrote Sarah Jane Burfield. "I am now 21 and have just graduated from nursing school. I am so thankful for the awareness for CHD children."Sarah Jane Burfield/Facebook
"My tiny heart warrior," wrote Kacey Stoll. "She's been on a heart transplant list since 4 months old; diagnosed with dilated cardiomyopathy with extreme heart failure. She's still waiting at 21 months. She's a gift from God."
"My tiny heart warrior," wrote Kacey Stoll. "She's been on a heart transplant list since 4 months old; diagnosed with dilated cardiomyopathy with extreme heart failure. She's still waiting at 21 months. She's a gift from God."Kacey Stoll/Facebook
"This is our son Brandon. He lost his battle with CHD on October 24, 2017," said Kimberly Strickland. "He was born with aortic stenosis and bicuspid aortic valve disease. Scar tissue after three open heart surgeries eventually built up enough to collapse his left coronary artery. He was 11 years old. He fought from his very first heartbeat to his very last."
"This is our son Brandon. He lost his battle with CHD on October 24, 2017," said Kimberly Strickland. "He was born with aortic stenosis and bicuspid aortic valve disease. Scar tissue after three open heart surgeries eventually built up enough to collapse his left coronary artery. He was 11 years old. He fought from his very first heartbeat to his very last."Kimberly Strickland/Facebook
"My daughter was diagnosed with hypertrophic cardiomyopathy the day after she was born, had her heart transplant in September 2013 at 5 months old, went into rejection four years later and has been inpatient for seven months now," said Sara Lowe.
"My daughter was diagnosed with hypertrophic cardiomyopathy the day after she was born, had her heart transplant in September 2013 at 5 months old, went into rejection four years later and has been inpatient for seven months now," said Sara Lowe.Sara Lowe/Facebook
"My son Samuel was born with a rare heart condition: tricuspid asterias. It wasn't found until he was 4 months old," said Velma Strait. "He had several open heart surgeries and had a pacemaker at 5 years then at 13 years. He had a cardiac arrest and stroke, at that time had a defibrillator put in. At the age of 15, we lost Samuel."
"My son Samuel was born with a rare heart condition: tricuspid asterias. It wasn't found until he was 4 months old," said Velma Strait. "He had several open heart surgeries and had a pacemaker at 5 years then at 13 years. He had a cardiac arrest and stroke, at that time had a defibrillator put in. At the age of 15, we lost Samuel."Velma Strait/Facebook
"My son, born with double outlet right ventricle, will be 5 this year," wrote Kristine Thompson Slovis. "Just because he has half a heart doesn't mean his life can't be whole."
"My son, born with double outlet right ventricle, will be 5 this year," wrote Kristine Thompson Slovis. "Just because he has half a heart doesn't mean his life can't be whole."Kristine Thompson Slovis/Facebook
"Our sweet Luke blessed us with his presence for 30 days," said Melissa Brookshire. "He was diagnosed in utero with tricuspid atresia. He was not a candidate for surgery due to prematurity. His twin brother is almost 3 years old now and heart-healthy. CHD takes far too many children away from those that love them."
"Our sweet Luke blessed us with his presence for 30 days," said Melissa Brookshire. "He was diagnosed in utero with tricuspid atresia. He was not a candidate for surgery due to prematurity. His twin brother is almost 3 years old now and heart-healthy. CHD takes far too many children away from those that love them."Melissa Brookshire/Facebook
"This is my sweet CHD angel, Christopher," shared Toni Roddy. "He had hypoplastic left heart syndrome and lung disease. He passed away at 5 months and 5 days old."
"This is my sweet CHD angel, Christopher," shared Toni Roddy. "He had hypoplastic left heart syndrome and lung disease. He passed away at 5 months and 5 days old."Toni Roddy/Facebook
"This is my daughter two days before she passed away," said Kellie Fowler. "She was born with hypoplastic left heart syndrome and a few other heart defects. She lost her life two days shy of 9 months old. She had three open heart surgeries including a heart transplant...these kids are definitely loving and definitely go through more pain than anyone should have to."
"This is my daughter two days before she passed away," said Kellie Fowler. "She was born with hypoplastic left heart syndrome and a few other heart defects. She lost her life two days shy of 9 months old. She had three open heart surgeries including a heart transplant...these kids are definitely loving and definitely go through more pain than anyone should have to."Kellie Fowler/Facebook
"My sweet Jensen Granger, diagnosed with left coronary ostial atresia and mitral valve regurgitation," shared Courtney Nicole. "He has had two open heart surgeries to replace his valve; his most recent (was) on Christmas Eve 2017 just a week before this picture was taken. He turned 1 on January 10, 2018 and is the bravest, happiest little man around."
"My sweet Jensen Granger, diagnosed with left coronary ostial atresia and mitral valve regurgitation," shared Courtney Nicole. "He has had two open heart surgeries to replace his valve; his most recent (was) on Christmas Eve 2017 just a week before this picture was taken. He turned 1 on January 10, 2018 and is the bravest, happiest little man around."Courtney Nicole/Facebook
"Our CHD angel will forever be 3," wrote Misty Humphreys. "She changed all of us and touched many lives in her three short years here on earth."
"Our CHD angel will forever be 3," wrote Misty Humphreys. "She changed all of us and touched many lives in her three short years here on earth."Misty Humphreys/Facebook
"My 7-year-old heart warrior is in first grade and lives a completely typical life," shared Abby Toriz. "She's had three open heart surgeries, two heart catheter procedures and takes daily aspirin. Have hope!"
"My 7-year-old heart warrior is in first grade and lives a completely typical life," shared Abby Toriz. "She's had three open heart surgeries, two heart catheter procedures and takes daily aspirin. Have hope!"Abby Toriz/Facebook
"The strength and love a CHD warrior can bring is like nothing I could ever explain," said Megan Marshall. "Our heart warrior princess is just 7 months old; she is our fifth child and a miracle from the start. She has taught us to be strong, have faith and pray without ceasing. She is a fighter and is a great example to all of us to be strong. In her short life she has already conquered more then some do in an entire lifetime."
"The strength and love a CHD warrior can bring is like nothing I could ever explain," said Megan Marshall. "Our heart warrior princess is just 7 months old; she is our fifth child and a miracle from the start. She has taught us to be strong, have faith and pray without ceasing. She is a fighter and is a great example to all of us to be strong. In her short life she has already conquered more then some do in an entire lifetime."Megan Marshall/Facebook
"This is my Julia," wrote Cheryl Salgado. "She would have turned sweet 16 on January 17, 2018. We lost her when she was 2. She was born with dilated cardiomyopathy. I miss her every day of my life."
"This is my Julia," wrote Cheryl Salgado. "She would have turned sweet 16 on January 17, 2018. We lost her when she was 2. She was born with dilated cardiomyopathy. I miss her every day of my life."Cheryl Salgado/Facebook
"Strongest girl I know. Two open heart surgeries, two pacemakers, and multiple sternal infections later, she will be 4 on February 20," wrote Kimber Brittany Amborn. "We were told to put her on hospice care before her first birthday...she started life at only 1 pound, 7 ounces and has never stopped fighting!"
"Strongest girl I know. Two open heart surgeries, two pacemakers, and multiple sternal infections later, she will be 4 on February 20," wrote Kimber Brittany Amborn. "We were told to put her on hospice care before her first birthday...she started life at only 1 pound, 7 ounces and has never stopped fighting!"Kimber Brittany Amborn/Facebook
"My sister, Alicia Maria, was born on November 16, 1980 and passed on August 17, 1983 during a pioneering surgery for kids with CHD," wrote Angela Tessier. "She is a pioneering hero of so many early treatments. It warms my family to see so many success stories."
"My sister, Alicia Maria, was born on November 16, 1980 and passed on August 17, 1983 during a pioneering surgery for kids with CHD," wrote Angela Tessier. "She is a pioneering hero of so many early treatments. It warms my family to see so many success stories."Angela Tessier/Facebook
"Kids with congenital heart disease grow up to be adults with congenital heart disease," said Ann Yurcek. "They will need comprehensive life-long care. My miracle daughter Becca, 28, living with CHD and Noonan Syndrome."
"Kids with congenital heart disease grow up to be adults with congenital heart disease," said Ann Yurcek. "They will need comprehensive life-long care. My miracle daughter Becca, 28, living with CHD and Noonan Syndrome."Ann Yurcek/Facebook
"This is my little CHD warrior," shared Randi Day. "He fought six hard years and showed me how to slow down and enjoy life before it's gone."
"This is my little CHD warrior," shared Randi Day. "He fought six hard years and showed me how to slow down and enjoy life before it's gone."Randi Day/Facebook
"My daughter, Erin, was diagnosed with a large perimembraneous ventricular septal defect at two weeks of age," said Kristi Kinnard. "She had her surgery at 12 months...of course, she has life-long follow up, but she is 28 and very active, runs in marathons and does Cross Fit."
"My daughter, Erin, was diagnosed with a large perimembraneous ventricular septal defect at two weeks of age," said Kristi Kinnard. "She had her surgery at 12 months...of course, she has life-long follow up, but she is 28 and very active, runs in marathons and does Cross Fit."Kristi K. Kinnard/Facebook
"Our heart warrior, Camila, received her heart transplant on December 3, 2017, the 50th anniversary of the world's first transplant," said Chris Tiernan. "She recently came home after spending her first 100 days at Phoenix Children's Hospital."
"Our heart warrior, Camila, received her heart transplant on December 3, 2017, the 50th anniversary of the world's first transplant," said Chris Tiernan. "She recently came home after spending her first 100 days at Phoenix Children's Hospital."Chris Tiernan/Facebook
"Our son Aaron was born with a congenital heart defect. He's endured four heart surgeries before the age of 5," wrote Heather Silva. "He is our very own brave super hero. Thank you for sharing stories about those affected by congenital heart defects. Awareness not only saves lives, but also honors those who have lost their battle."
"Our son Aaron was born with a congenital heart defect. He's endured four heart surgeries before the age of 5," wrote Heather Silva. "He is our very own brave super hero. Thank you for sharing stories about those affected by congenital heart defects. Awareness not only saves lives, but also honors those who have lost their battle."Claudia Farr Photography/Heather Silva/Facebook

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