Our inspiring patients are the reason Philly Spin-In was created and why we continue to strive to create breakthroughs for every child in our care. All donations to Philly Spin-In power cardiac research and care at Children’s Hospital of Philadelphia (CHOP).
Thank you for helping our heart warriors!
During a routine newborn exam, Alice’s doctor detected a heart murmur that needed further evaluation. “We knew that CHOP had the best team at the Cardiac Center to guide us through the uncertainty and help with the anxiety of having a baby with congenital heart disease,” says Alice’s mother, Ima. Within days of her birth, Alice was seen in CHOP’s Cardiac Center where she was diagnosed with a ventricular septal defect. Though she may need future surgical care, for now Alice receives regular echocardiograms to monitor the health of her heart. A bubbly toddler, Alice loves swim lessons, books and playing outside with neighborhood friends.
Amelia attends pre-K and loves dance class. She will also need lifelong cardiac care. Amelia was still in her mother’s womb when a fetal echo showed extensive heart abnormalities. Born in the Garbose Family Special Delivery Unit, Amelia underwent open-heart surgery at just 4 days old. After her second surgery at 3 months, Amelia remained inpatient for nine months, requiring several cardiac interventions. At nine months, she was discharged with a g-tube and a tracheostomy. Now 4, Amelia is monitored regularly to determine when her next cardiac intervention will be needed. “We owe each precious moment we’ve gotten with her to the Cardiac Center,” says her mom, Annika.
14-year-old Chloe plays travel softball and loves to dance. But when she was 11, she began to experience shortness of breath during extreme exercise. Though doctors initially thought Chloe had exercise-induced asthma, she was ultimately diagnosed with multiple atrial septal defects, or holes between the upper chambers of the heart, as well as mitral regurgitation. At CHOP, Chloe underwent open heart surgery to repair an atrial septal defect. Now, she’s been lifted of all exercise restrictions and is back to the sports she loves. “My hope is that Chloe will continue to embrace her diagnosis while never letting it hold her back,” says Chloe’s mom, Rachel.
Diagnosed in utero, Collin was born with Taussig-Bing anomaly, a heart malformation which includes double outlet right ventricle and ventricular septal defect. At only 5 days old, Collin underwent open-heart surgery to repair the defects. Post-surgery, CHOP doctors placed a pacemaker. When Colin’s heart rate dropped dangerously low this year, he had another surgery to repair a fractured pacemaker lead. “I remember a nurse telling me this is all part of Collin’s journey,” says his mom, Jennifer. “I’ve held on to that word. Collin’s whole life will be a journey, and we — his family — will be right by his side for all of it!”
When Gideon was still in his mother’s womb, he was diagnosed with coarctation of the aorta and multiple ventricular septal defects. Gideon has Holt Oram syndrome, a rare disease impacting the skeletal system and the heart. He has undergone several cardiac procedures; after his second open-heart surgery, he went into cardiac arrest and spent four days on lifesaving ECMO. Thanks to CHOP’s innovative cardiac care, Gideon’s heart now “looks fantastic.” A playful and curious 7-year-old, Gideon dreams of starting his own YouTube channel and living in a mansion with his friends!
Jonas was 2 weeks old when his pediatrician detected a heart murmur during a routine exam. Jonas’ family was referred to CHOP, where Jonas was ultimately diagnosed with a ventricular septal defect (VSD), or hole in his heart. At 15 months, Jonas underwent open-heart surgery to patch the VSD. His mom, Yvonne, remembers the attentive, individualized care they received in the Cardiac Intensive Care Unit while Jonas recovered. “We knew we were in the best hands possible,” she says. Now 2, Jonas loves riding his scooter and copying his big sister, Savannah.
A heart murmur at Kodi’s 1-month-checkup led to a diagnosis of patent ductus arteriosus (PDA), a condition in which the opening between the two major blood vessels leading from the heart doesn’t close after birth. Kodi needed surgery to close the vessels. Now, this bubbly 6-month-old loves to laugh and play with her big sister. “We hope Kodi never has to have another heart surgery,” says Kodi’s parents. “We’re participating in the Philly Spin In to raise funds for kids like Kodi.”
Lorenzo was diagnosed in utero with hypoplastic left heart syndrome. He underwent his first open heart surgery when he was only 3 days old, and his second four months later. Lorenzo’s doctors were beginning to plan for his third and final surgery when Lorenzo went into heart failure. He was placed on the transplant list and received a ventricular assist device (VAD) to keep him alive until a new heart could be found. In June 2022, Lorenzo underwent a heart transplant, just in time for his third birthday!
20-year-old Mia was born with a ventricular septal defect, or hole in the wall of her heart. For years, Mia was monitored at CHOP, but her VSD was small and did not require treatment. At 19, however, Mia developed a dry cough and began to lose weight. She had developed an infection in her pulmonary valve and needed valve replacement surgery. “She went through open-heart surgery with courage,” says her mother, Nicole. “She gave the rest of us strength.” Now, Mia is a busy college student who loves riding horses and spending time with her sister.
Oliver (“Ollie”) Powell was diagnosed in utero with hypoplastic left heart syndrome. At 4 days old, he underwent his first open-heart surgery and remained in the hospital until his second repair at 4 months. While recovering from this operation, Ollie suffered an unexpected cardiac arrest. After 35 minutes of CPR, Ollie was placed on ECMO but had sustained a profound brain injury from the lack of oxygen to his brain. At 6 months, he was finally discharged home. “He’s an absolute joy and spreads love to everyone he meets,” says Ollie’s mom, Emily. “CHOP gave us hope and gave Oliver a chance to live. That’s all we ever wanted for him.”
Paul (“Paulie”) was diagnosed in utero with hypoplastic left heart syndrome (HLHS). This happy baby has already undergone two open-heart surgeries, a heart catheterization and COVID-19 during the interstage period. Paulie’s mom, Anne Marie, says, “As the leading place for treating HLHS, we knew CHOP was the only place for our son’s care. Dr. Chen and Dr. Rychik were amazingly positive every step of the way. They gave us hope — our happy, healthy little boy!” Paulie’s parents are participating in Philly Spin-In to give hope to other children like Paulie. Now 15 months, Paulie is taking on new challenges every day, including eating by mouth and learning to walk!
Rita May’s Story
In CHOP’s Cardiac ICU, Rita May was nicknamed “Rebel Rita” for her determination and serious side-eye. That determination has gotten this fierce 16-month-old through three open-heart surgeries—including a heart transplant—multiple cardiac catheterizations and countless scans. Born with Turner syndrome, Rita May has a variant type of hypoplastic left heart syndrome. Still inpatient at CHOP, Rita May met her 3-year-old brother right before her heart transplant. Now, she loves laughing at his silly dance moves and reading books with him.
Tyler was born with multiple heart defects, including double outlet right ventricle and hypoplastic left ventricle. This sweet and shy little boy has already undergone open-heart surgery and multiple cardiac catheterizations. Tyler’s mom, Karleen, says she finds hope in the cutting-edge interventions and surgical procedures that keep kids like Tyler living well into adulthood. Tyler’s family is participating in Philly Spin-In to help raise funds to further advance pediatric cardiac research and care. Now 5, Tyler loves playing with his siblings and recently rode his first roller coaster!