Craniofacial Program Patient Stories
1 - 9 of 9
A New Ear: Lilliana’s Story
Lilliana was born with only one ear due to hemifacial microsomia, a condition in which the tissues on one side of the face are underdeveloped. Doctors at CHOP gave Lilliana a new ear.
Saethre-Chotzen Syndrome and Encephalocele: Elana’s Story
![Saethre-Chotzen Syndrome and Encephalocele: Elana’s Story - Kayak Saethre-Chotzen Syndrome and Encephalocele: Elana’s Story - Kayak](https://www.chop.edu/sites/default/files/styles/teaser/public/saethre-chotzen-syndrome-and-encephalocele-elana-s-story-kayak-16x9.jpg?itok=wP-meqt2)
Elana was born with abnormalities of her skull requiring surgery. When her parents came to CHOP, ‘We knew it was going to be OK.’
Lambdoid Craniosynostosis: Nora’s Story
![Nora crawling on the ground and smiling Nora crawling on the ground and smiling](https://www.chop.edu/sites/default/files/styles/teaser/public/lambdoid-craniosynostosis-patient-nora-16x9.jpg?itok=UhWm0evS)
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.
Saethre-Chotzen Syndrome and Blenderized Tube Feedings: Savannah's Story
![Savannah Savannah](https://www.chop.edu/sites/default/files/styles/teaser/public/Savannah-16x9.jpg?itok=RB1Ygk8b)
CHOP dietitians work with Savannah’s parents to find a ‘real food’ solution to meet her medical needs and her family's wishes.
Sagittal Craniosynostosis: Bear's Story
When Bear's head became misshapen as an infant due to craniosynostosis, his family learned he needed surgery on his skull.
Unicoronal and Sagittal Craniosynostosis: Brynnli's Story
![Brynnli smiling Brynnli smiling](https://www.chop.edu/sites/default/files/styles/teaser/public/craniosynostosis-patient-brynnli-16x9.jpg?itok=oYpvIYYX)
When Brynnli's mom noticed her daughter's head was growing strangely, she sought help from craniofacial experts at CHOP.
Goldenhar Syndrome: Emily’s Story
![Emily Merrill Emily Merrill](https://www.chop.edu/sites/default/files/styles/teaser/public/emily-merrill-smiling-780x439.jpg?itok=9z2r5Vs4)
Born with tetralogy of Fallot and Goldenhar syndrome, Emily has endured dozens of surgeries in the past 14 years, and her mission is to teach kindness and acceptance.
Goldenhar Syndrome & Von Willebrand Syndrome: Aidan's Story
Aidan was born with Goldenhar syndrome and Von Willebrand syndrome, two rare genetic conditions that need expert medical management. He receives care from The Children's Hospital of Philadelphia at CHOP Specialty Care Centers in New Jersey.
Tetralogy of Fallot and Craniosynostosis: William's Story
![william swimming](https://www.chop.edu/sites/default/files/styles/teaser/public/patient-story-william-canonical.jpg?itok=x6eWt_16)
William was born with tetralogy of Fallot, a heart condition that requires open heart surgery shortly after birth, and had surgery at CHOP.