Our patients' stories
Fetoscopic Endoluminal Tracheal Occlusion Offers Hope for Prenatally Diagnosed Cases of Severe Congenital Diaphragmatic Hernia
CDH can be a devastating diagnosis for an expecting parent to receive. But for a select group of babies with the most severe form of CDH, treatment before birth may help.

Aortic Dissection: Joslyn’s Story
A genetic connective tissue disorder leads to multiple aortic aneurysms and life-threatening dissection in an 11-year-old.

Elite Athlete Injuries: Maia’s Story
Supported by CHOP over the years, Maia, 18, is hoping to join the U.S. Olympic fencing team to compete in the Summer Olympics.

Gavin’s Story: Spine Surgery to Correct a Deformity Caused By a Rare Genetic Neuromuscular Disorder
When Gavin was born, doctors didn’t expect him to survive, but thanks to a large team of specialists and a coordinated spine surgery, he’s defying the odds.

Thomas’s Story: Prenatal Diagnosis and Postnatal Surgical Repair of Encephalocele
One family shares their experience for parents who learn their child has a severe diagnosis before birth

Cricotracheal Resection for Subglottic Stenosis: Zakary’s Story
The team at the Center for Pediatric Airway Disorders gave Zakary what he’d never before had: a fully functioning airway.

Unilateral Hearing Loss and Cochlear Implant: Abby’s Story
Spontaneous total hearing loss in one ear turned out to be only a bump in the road — not an end of dreams — for Abby, who had a cochlear implant at CHOP at 17.

New Genetic Condition Identified: Luke’s Story
Luke’s repeated infections worried his parents and puzzled his doctors. Whole-exome sequencing helped CHOP researchers discover a new genetic disease causing his symptoms and determine the best course of treatment.

From Cancer to Sepsis and Beyond: Kathryn’s Story
Kathryn has overcome more in her 17 years than most do in a lifetime. Learn how CHOP helped her and her family face each new challenge.

Maddie’s Story: Tracheostomy Surgery for Chronic Lung Disease
Thanks to care from CHOP’s Newborn and Infant Chronic Lung Disease (NeoCLD) Program and a new, catheter-based surgery to close her congenital heart defect, Maddie is home and makes developmental gains every day.

Morgan’s Story: Overcoming Brain Injury After Ischemic Stroke
After just a year of care from CHOP’s Pediatric Stroke Program, 16-year-old Morgan has regained her ability to speak and is back to doing the sports she loves.
Pseudotumor Cerebri Syndrome: Lily’s Story
With pseudotumor cerebri syndrome, the symptoms are real even though the tumor is not. Lily relied on her CHOP doctors and her own perseverance to combat the condition.

Leigh Syndrome: A Family’s Quest for Answers
When CHOP discovered the genetic mutation that caused two boys’ early deaths, their family donated $2 million to CHOP to propel mitochondrial disease research even further.

CHOP’s First Ozaki Procedure: Sam’s Story
A young athlete’s love of sports is derailed by valve disease, until an innovative procedure gets him back in his game.

Lymphatic Microsurgery: Daniel’s Story
Diagnosed with a rare lymphatic condition called chylothorax, a newborn undergoes life-saving surgery at CHOP’s Center for Lymphatic Disorders.

Duchenne Muscular Dystrophy: Cooper’s Story
Cooper was one of the first at CHOP to receive a new FDA-approved infusion therapy for Duchenne muscular dystrophy, which is given to him at home. Results are promising.

A Game-Changer for When a Fever Can Be Life-Threatening
Whenever a cancer patient like Max gets a fever, it’s an emergency. CHOP’s new hospital in King of Prussia will mean a closer ER for these frightening moments.

Overcoming Feeding Issues from Congenital Diaphragmatic Hernia: Maggie’s Story
Born with a hole in her diaphragm (congenital diaphragmatic hernia), feeding difficulties were one of the biggest hurdles little Maggie has had to face in her CDH journey.

Hypogammaglobulinemia: Dylan’s Story
Looking for bright spot during COVID-19? Look no further than 7-year-old Dylan, an active 2nd grader who’s had his first infection-free year in his entire life.

Ewing Sarcoma and Growth Hormone Deficiency: Vanessa’s Story
A tumor in the bones around her eye robbed Vanessa of her vision in one eye, but she showed strength and resilience dealing with treatment and long-term side effects.