Our patients' stories

Postnatal Surgery for Congenital Cystic Adenomatoid Malformation: Emma’s Story
Emma, now 25, was born with a life-threatening birth defect. Her family’s experience at CHOP early on in her life have inspired her to pursue a career in science.

Lambdoid Craniosynostosis: Nora’s Story
Nora had the least common type of fused skull seam. Her CHOP surgeon had all the tools in his toolbox for the many surgical ways to treat it.

ACL surgery at the Middleman Family Pavilion: Liam’s story
When 12-year-old Liam tore his ACL playing basketball, his family found the best-in-nation orthopedic care he needed, conveniently close to home.

Critical Care and Resuscitation Science Center/Academy for Resuscitation of Children: Emma’s Story
Emma’s heart stopped beating for 11 minutes, but personalized resuscitation and highly skill care brought her back to life. Now she’s fully recovered and thriving.

Medulloblastoma and Integrative Oncology: Kellan’s Story
During Kellan’s treatment for an aggressive brain cancer, he was having a session with CHOP yoga therapist Tonia Kulp, MS, C-IAYT. She explained what a mantra was, and how he could use one in tough times to center himself. Kellan picked a card that said: Today I choose happiness.

PICU Experience at the Middleman Family Pavilion: Louie’s Story
After a recent surgery to repair a fractured leg, Louie was transferred to the Middleman Family Pavilion in King of Prussia to recover, which is much closer to the family’s home.

ENT Surgery at the Middleman Family Pavilion: Carter’s Story
After multiple failed hearing tests, 6-month-old Carter needed ear tube surgery. His family found the expert ENT care they needed conveniently close to home.

Coming Back After Concussion: Max’s Story
Teen makes full recovery after concussion, thanks to supportive care and innovative approach at CHOP.

Trisomy 21: Bryant’s Story
A year into the COVID-19 pandemic, Bryant’s family received a wake-up call from the staff at the Trisomy 21 Program. Instead of steadily improving since his last visit, Bryant’s behavior had become troublesome, he’d gained a significant amount of weight and his blood work was concerning.

Desmoid Tumor: Vaida’s Story
Vaida’s tumor is in her cheek, a rare location for a desmoid tumor. After surgery at CHOP, this 2-year-old has retained an impressive amount of facial muscle function.

Esofagitis eosinofílica: La historia de Princess
Hace años que Princess lucha contra una enfermedad inflamatoria del esófago poco frecuente. Gracias a CHOP, un nuevo medicamento y el apoyo de su familia, ahora está mejorando.

EDEM3-CDG: Austin, Savannah and Lily’s story
Mysterious symptoms in one family’s three children leads to identification at CHOP of a new form of congenital disorder of glycosylation (CDG).

Autism, Language Disorder, and Augmentative and Alternative Communication: Julian’s Story
Because Julian is nonspeaking, he needed communication device — and the patient coaching from a speech-language pathologist — to open up his world.

Coming Full Circle: MarlaJan’s Story
From a tetralogy of Fallot patient to a Cardiac Center nurse, MarlaJan’s heart journey has made her an advocate for children with CHD.

Pulmonary Heart Valve Replacement as an Adult: Russell’s Story
When a 49-year-old TOF patient needed a pulmonary valve replacement, the Topolewski Pediatric Heart Valve Center offered a minimally invasive solution.

Papillary Thyroid Cancer Second Opinion: Rowan’s Story
After Rowan was diagnosed with thyroid cancer, she was treated with precision medicine at CHOP by experts in pediatric thyroid issues and rare pediatric cancers.

Chronic Lung Disease: Ethan’s Story
While doctors at CHOP helped Ethan’s premature lungs develop, other staff helped his family manage the stress of having a sick newborn.

WAGR Syndrome: Miranda’s Story
CHOP researchers have published the most comprehensive description of WAGR syndrome, which affects less than 450 people worldwide, including Miranda.

A Dream Fulfilled: From Surgery as a Newborn to a Nurse in the ICU
Abby underwent surgery to remove a lung lesion at CHOP in her first few days of life and is now, 26 years later, a nurse in the Hospital’s ICU.

Double Lung Transplant: Marcellius’s Story
As a toddler with lung disease, Marcellius was given five years to live. A double lung transplant at CHOP saved him, and he’s now a young adult.