Our Stories

Isabella

Isabella Hope was born with a complex congenital heart defect. Her diagnosis includes Double inlet left ventricle and Hypoplastic right heart. Essentially, Bella was born with half of a heart. She has endured 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 and had two pleural effusions that required long hospital stays.

Today, Isabella takes gymnastics, loves to read and ride her bike. Isabella is supported by her amazing cousins, friends and family. Isabella lives with a single ventricle. When she was born there were only a handful of children who survived into adulthood. Through research and advancements such as the Single Ventricle Survivorship program Isabella and others like her will be able to grow up receiving the care they need.

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.

Caden

Caden was born in the CHOP Garbose Special Delivery Unit with d-TGA, VSD and PS – his aorta and pulmonary artery were switched, he had a hole between the lower chambers of his heart, and a narrowing of his pulmonary valve. This defect was discovered during an ultrasound about 19 weeks into pregnancy. Due to his PS, Caden’s case of d-TGA was not straightforward; he underwent surgery at 4 and 12 months old. His “big” surgery involved a Rastelli  to correct the d-TGA.

Caden will outgrow his conduit at some point later in childhood and need it replaced to grow into adulthood, but the hardest, biggest surgery is now behind him. His regular cardiac follow-ups have all been great. His heart is strong, he is thriving and is meeting all of his normal developmental milestones.

Joseph

Before his birth in 2005, doctors had detected a major anomaly in his heart. Immediately after he was born, Joseph was admitted into the Cardiac Center at Children’s Hospital of Philadelphia, where he was monitored and tested for several days. Joseph’s diagnosis was complex including Congenitally Corrected Transposition of the Great Arties and Hypolplastic Right Heart Syndrome. At eight months old, a cardiac catheterization indicated that Joseph was in need of surgery. At that time he underwent the Glenn procedure after which he remained in CHOP’s Intensive Care Unit for two weeks. Joseph did very well for the next two years, and at age three, he underwent his second surgery: the Fontan.

Today Joseph is a happy and energetic little boy who loves animals, skiing, and fishing. Because Joseph’s heart now functions as a single ventricle, his family expects that there will most likely be issues for him as he grows, but they all remain highly positive and committed to helping Big Hearts fund the research that will save Joseph and so many other children like him.

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.

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.

Maximus

Maximus was born with a CHD called Transposition of the Great Arteries (TGA) with Ventricle Septal defect (VSD) and Pulmonary Stenosis. He was born in the Special Delivery Unit (SDU) of Children’s Hospital of Philadelphia (CHOP) and was transferred about an hour after birth to the Cardiac Intensive Care Unit (CICU). At two days old, this brave, little heart warrior underwent an Arterial Switch. Max will never know how brave he was, and he will never know how scared we were.

Today, Max is a happy and healthy child who attends school, loves to go to playgrounds, ride his plasma car, sing and dance, and run everywhere he goes! He is a joy to be around and we are thankful every day to have him in our lives!

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