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Early Intervention, Remarkable Outcome: Laurence’s Experience with Craniosynostosis

Early Intervention, Remarkable Outcome: Laurence’s Experience with Craniosynostosis

Early Intervention, Remarkable Outcome: Laurence’s Experience with Craniosynostosis

Laurence

“We knew something was different immediately,” says Laura, reflecting on the early days after her son, Laurence, was born with a ridge running down his forehead. Because many babies are born with an abnormally shaped head after delivery, Laura’s doctors recommended waiting a month before having an X-ray performed. When Laurence’s features did not change, their family pediatrician referred them to Children’s Hospital of Philadelphia (CHOP). 

Living in South Jersey, “we were lucky to have CHOP in our backyard,” says Laura. 

At two months old, Laurence was diagnosed with metopic craniosynostosis. Typically, the bands of tissue that connect the bones of the skull (known as sutures) in a developing infant fuse in a gradual process that occurs over time. Craniosynostosis is a medical problem, in which the sutures fuse too early and can restrict brain growth. 

Children with metopic craniosynostosis from premature fusing have a noticeable ridge along their foreheads and their eyes can appear too close together. Surgery is necessary to relieve pressure on the brain and prevent possible complications, such as seizures and developmental delays. 

'They hold your hand.’ 

Laura and Rocco, Laurence’s dad, visited several hospitals before — after meeting Dr. Jesse Taylor, MD, Chief of CHOP’s Division of Plastic, Reconstructive and Oral Surgery and Co-Director of the Craniofacial Program — they decided CHOP was the best place for their son’s care. 

“From the moment we walked through the door, we were met with compassion, expertise and a commitment to make a difference,” Laura says. 

Dr. Taylor explained every step of Laurence’s reconstructive surgery to Laura and Rocc​o​​.​  

Laurence playing basketball

“It was obviously very stressful,” says Laura. “But at CHOP, they know parents are scared. They take care of you; all the way through, they hold your hand. ​We ​never once felt like someone wasn’t standing next to ​us​​,​ telling ​us​, ‘it’s going to be okay.’” 

At 8 months old, Laurence underwent cranial vault remodeling, also known as cranial vault reconstruction, which involves the reshaping of cranial bones in a single stage surgery. Laura remembers the way her son looked after surgery, with “wires and tubes all over him.” As she sat next to his ICU bed, a compassionate nurse made an unforgettable gesture. “She asked, ‘do you want to get in with him?’” Laura says. “And then she rearranged the tubes and wires and helped me get in the bed so I could hold my son through the night.” 

A remarkable recovery

After discharge, Laurence was seen by Dr. Taylor annually, and then bi-annually, and now only as needed.  

At 6’2” and 14 years old, Laurence is thriving. A very active teen, he excels academically and participates in several extracurricular activities, including basketball, piano and saxophone. His musical talents extend to jazz and marching band, and he participates in the Youth Orchestra of Bucks County.  

Says Laura, “Laurence’s remarkable recovery and achievements are a testament to the success of his surgery and the ongoing care he has received at CHOP. His positive experience highlights the importance of early diagnosis and intervention for craniosynostosis. We are forever grateful!” 

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