Caden

Caden is 6 years old and was diagnosed in utero with Transposition of the Great Arteries, Pulmonary Stenosis and a Ventricular Septal Defect (d-TGA, PA, VSD). He was born at CHOP in the Garbose Special Delivery Unit and underwent an atrial septostomy just hours after birth. Caden has had two open heart surgeries at 4 months old and one year old, and will likely need another in his adolescence.

Despite this challenging start in life, Caden has thrived and enjoys being one of the gang in first grade. He’s smart, funny and athletic, particularly enjoying math, video games, baseball and anything where he gets to be FAST!

Cassidy

Following a high risk pregnancy and extremely long labor, the doctors and nurses were very quiet upon her delivery – Cassidy Jane was blue and quiet. She was born with severe Pulmonary Stenosis and was flown out of Kimball Hospital in Lakewood by helicopter five hours after her delivery over to the Cardiac ICU at The Children’s Hospital of Philadelphia.  After five days of monitoring she was taken in for heart surgery and received a balloon catheterization. Cassidy continues to have follow-up visit; so far, each visit has been a steady thumbs up from a central NJ pediatric cardiologist.

Christian

Christian is 9 months old and was diagnosed in utero with hypoplastic left heart syndrome (HLHS). He was born in the special delivery at CHOP and underwent his first open heart surgery at 5 days old  At 4 months old he had his second open heart surgery. He will need at least one more surgery by the time he turns 4. Nothing stops Christian! He has met every developmental milestone right on time. He loves his jumper and playing with his dog brother Koda. His smile can brighten up any room! Sometimes we forget how serious his heart condition is because he lives life like any “normal” 9 month old!

Isabella

Isabella Hope was born with Hypoplastic Right Heart. Essentially, Bella functions with half of a heart. She has had 3 open heart surgeries at the Children’s Hospital of Philadelphia. The surgeries enable her left ventricle to complete the tasks of her entire heart. In addition, Bella suffered a stroke at birth. When she was born there were only a handful of children who survived into adulthood. Today, Isabella is in 8th grade, she loves dance class, ice skating and hanging out with friends and cousins. While we know Isabella will have a long road ahead of her, we also know that through research and programs, Isabella and other children with CHD will have the chance to grow up receiving the care they need.

Joseph

Joseph was born with hypoplastic right ventricle had underwent surgeries at 8 months had 3 years of age. He now functions with a single ventricle, or “half a heart,” yet he is a thriving, happy, sweet 13 year old who loves skiing and acting. His condition will most likely require future medical intervention, but his family has great hope that advances will be made.

 

Kyle

Kyle was born at CHOP in May 2018 with aortic arch hypoplasia. At 5 days old he had his thoracotomy surgery to fix his coarctation. Since then, he has been treated for pulmonary hypertension from his CHD. Recently he has seen improvements in this area with no current signs of hypertension, has weaned off all of his medication and is doing well. He is his family’s little warrior and they couldn’t be prouder!

Mary

Mary was born 1 week late through induced labor. At birth she was a healthy baby, with a little jaundice, but no extreme problems. Four days later during a routine jaundice check, her pediatrician noticed a heart murmur. This led to a full workup at the Cardiac Center of Children’s Hospital of Philadelphia. There Mary was diagnosed with two Ventricular Septal Defects (VSD) and one Atrial Septal Defect (ASD) and a Partial Anomalous Venus Return. At one month of age, Mary had Open Heart surgery to close two holes in her heart. The third hold closed on its own. At this time, she was also diagnosed with bilateral hip dypslasia, vision and hearing issues, tortocollis, and feeding difficulties. At 15 months of age genetic testing confirmed that Mary has a rare genetic disorder called Trisomy 14 Mosaic. At her birth, she was #21 to have this diagnosis.

Maximilian

This is Maximilian. He was born in 2009 with Transposition of the Great Arteries requiring open-heart surgery when he was two days old. Now he is a thriving, ambitious, diligent student. A loving, loyal, and funny friend. A future inventor, dad and world-changer. He is here because others before him thought his life was worth fighting for.

Maximus

Maximus was born at CHOP in May 2011. At 2 days old, he underwent the arterial switch surgery in order to repair Transposition of the Great Arteries, Ventricular Septal Defect, and Pulmonary Stenosis. He sees his cardiologist yearly to make sure he’s doing OK. Today, Maximus enjoys soccer, baseball, basketball, and tennis. He’s the sweetest big brother and LOVES spending time with his family. We’ll often find him reading to and playing with his little brother, Kellan.

Paityn

When Paityn Rose was born, she was diagnosed with a life-threatening cardiac defect at delivery. Immediately CHOP was notified and their Mobile Intensive Care Unit was dispatched. Paityn was stabilized and off they sped back to CHOP. She was diagnosed with a very complicated and rare anomaly, including a congenital left ventricular to aortic tunnel, obstructive pulmonic valve defect, and stenosis of aortic valve. Immediate lifesaving surgery was necessary, and the cardiologist stressed the probability of operative success was slight. The cardiologist and his team performed a miracle – Paityn left CHOP after two weeks with a little heart that never gave up. She lived a happy, normal, little girl life after surgery.

Tragically, her story does not have a happy ending. Paityn developed a completely unrelated acute problem, and died unexpectedly at age 8 ½.

There are no words to explain our devastation. We miss her every day. We will, however, always be grateful for the CHOP Cardiac team, and their compassionate, professional and lifesaving work. And especially we are thankful for the years we did have to love and cherish Paityn. We very much want to continue to support their work through Big Hearts to Little Hearts.

Caden

Caden is 6 years old and was diagnosed in utero with Transposition of the Great Arteries, Pulmonary Stenosis and a Ventricular Septal Defect (d-TGA, PA, VSD). He was born at CHOP in the Garbose Special Delivery Unit and underwent an atrial septostomy just hours after birth. Caden has had two open heart surgeries at 4 months old and one year old, and will likely need another in his adolescence. Despite this challenging start in life, Caden has thrived and enjoys being one of the gang in first grade. He’s smart, funny and athletic, particularly enjoying math, video games, baseball and anything where he gets to be FAST!

Cassidy

Following a high risk pregnancy and extremely long labor, the doctors and nurses were very quiet upon her delivery – Cassidy Jane was blue and quiet. She was born with severe Pulmonary Stenosis and was flown out of Kimball Hospital in Lakewood by helicopter five hours after her delivery over to the Cardiac ICU at The Children’s Hospital of Philadelphia.  After five days of monitoring she was taken in for heart surgery and received a balloon catheterization. Cassidy continues to have follow-up visit; so far, each visit has been a steady thumbs up from a central NJ pediatric cardiologist.

Christian

Christian is 9 months old and was diagnosed in utero with hypoplastic left heart syndrome (HLHS). He was born in the special delivery at CHOP and underwent his first open heart surgery at 5 days old. At 4 months old he had his second open heart surgery. He will need at least one more surgery by the time he turns 4. Nothing stops Christian! He has met every developmental milestone right on time. He loves his jumper and playing with his dog brother Koda. His smile can brighten up any room! Sometimes we forget how serious his heart condition is because he lives life like any “normal” 9 month old!

Isabella

Isabella Hope was born with Hypoplastic Right Heart. Essentially, Bella functions with half of a heart. She has had 3 open heart surgeries at the Children’s Hospital of Philadelphia. The surgeries enable her left ventricle to complete the tasks of her entire heart. In addition, Bella suffered a stroke at birth. When she was born there were only a handful of children who survived into adulthood. Today, Isabella is in 8th grade, she loves dance class, ice skating and hanging out with friends and cousins. While we know Isabella will have a long road ahead of her, we also know that through research and programs, Isabella and other children with CHD will have the chance to grow up receiving the care they need.

Joseph

Joseph was born with hypoplastic right ventricle had underwent surgeries at 8 months had 3 years of age. He now functions with a single ventricle, or “half a heart,” yet he is a thriving, happy, sweet 13 year old who loves skiing and acting. His condition will most likely require future medical intervention, but his family has great hope that advances will be made.

 

Kyle

Kyle was born at CHOP in May 2018 with aortic arch hypoplasia. At 5 days old he had his thoracotomy surgery to fix his coarctation. Since then, he has been treated for pulmonary hypertension from his CHD. Recently he has seen improvements in this area with no current signs of hypertension, has weaned off all of his medication and is doing well. He is his family’s little warrior and they couldn’t be prouder!

Mary

Mary was born 1 week late through induced labor. At birth she was a healthy baby, with a little jaundice, but no extreme problems. Four days later during a routine jaundice check, her pediatrician noticed a heart murmur. This led to a full workup at the Cardiac Center of Children’s Hospital of Philadelphia. There Mary was diagnosed with two Ventricular Septal Defects (VSD) and one Atrial Septal Defect (ASD) and a Partial Anomalous Venus Return. At one month of age, Mary had Open Heart surgery to close two holes in her heart. The third hold closed on its own. At this time, she was also diagnosed with bilateral hip dypslasia, vision and hearing issues, tortocollis, and feeding difficulties. At 15 months of age genetic testing confirmed that Mary has a rare genetic disorder called Trisomy 14 Mosaic. At her birth, she was #21 to have this diagnosis.

Maximilian

This is Maximilian. He was born in 2009 with Transposition of the Great Arteries requiring open-heart surgery when he was two days old. Now he is a thriving, ambitious, diligent student. A loving, loyal, and funny friend. A future inventor, dad and world-changer. He is here because others before him thought his life was worth fighting for.

Maximus

Maximus was born at CHOP in May 2011. At 2 days old, he underwent the arterial switch surgery in order to repair Transposition of the Great Arteries, Ventricular Septal Defect, and Pulmonary Stenosis. He sees his cardiologist yearly to make sure he’s doing OK. Today, Maximus enjoys soccer, baseball, basketball, and tennis. He’s the sweetest big brother and LOVES spending time with his family. We’ll often find him reading to and playing with his little brother, Kellan.

Paityn

When Paityn Rose was born, she was diagnosed with a life-threatening cardiac defect at delivery. Immediately CHOP was notified and their Mobile Intensive Care Unit was dispatched. Paityn was stabilized and off they sped back to CHOP. She was diagnosed with a very complicated and rare anomaly, including a congenital left ventricular to aortic tunnel, obstructive pulmonic valve defect, and stenosis of aortic valve. Immediate lifesaving surgery was necessary, and the cardiologist stressed the probability of operative success was slight. The cardiologist and his team performed a miracle – Paityn left CHOP after two weeks with a little heart that never gave up. She lived a happy, normal, little girl life after surgery.

Tragically, her story does not have a happy ending. Paityn developed a completely unrelated acute problem, and died unexpectedly at age 8 ½.

There are no words to explain our devastation. We miss her every day. We will, however, always be grateful for the CHOP Cardiac team, and their compassionate, professional and lifesaving work. And especially we are thankful for the years we did have to love and cherish Paityn. We very much want to continue to support their work through Big Hearts to Little Hearts.

 

Most parents of CHD babies have never heard of the disease until the time of diagnosis.  Although nearly 1,000,000 children worldwide – approximately 40,000 in the USA – are born with CHD, there is very little awareness of the condition. CHD research and programs are grossly underfunded, in comparison to other pediatric conditions.  With the available research programs, including several that are funded by Big Hearts to Little Hearts, there is more hope worldwide for children and young adults with CHD than ever before.

Do you have or know a child with CHD?  The families of Big Hearts to Little Hearts understand what it is like to learn that a baby you love is affected by the disease. To learn more about Big Hearts to Little Hearts, please contact Lynne