patient story

patient name: Samantha Null

age: 8 months

condition: Apert syndrome

seen in: The Craniofacial Center

providers: Salim Mancho, DO, FACS, Shobhan Vachhrajani, MD, PhD, FRCSC

During their 20-week ultrasound, Danielle and Aaron Null learned that their unborn daughter, Samantha, appeared to have Apert syndrome. This genetic condition is characterized by skeletal malformations and the severity of symptoms varies among individuals. A key feature of Apert is the premature closure of the skull bones, called craniosynostosis. In addition, various fingers and toes may be webbed/fused together, called syndactyly.

After taking in all the new information about Samantha, and that she might be born prematurely, her parents knew they would need expert pediatric care and turned to Dayton Children's Hospital. Even before Samantha was born, Danielle and Aaron toured Dayton Children's and met with Salim Mancho, DO, pediatric craniofacial and reconstructive surgeon, and Shobhan Vachhrajani, MD, pediatric neurosurgeon to discuss her plan of care.

finding comfort in the NICU

In December 2022, Samantha was born and within three hours, she was on her way to Dayton Children's newborn intensive care unit (NICU) where she would spend the next three weeks.

Samantha's parents felt an unexpected amount of comfort while their daughter was in the caring hands of the NICU nurses. Her nurses kept them informed of everything that happened throughout each day. Danielle and Aaron couldn't stay at the hospital all day, every day, because they don't live locally and they also had to make time to care for Samantha's two older sisters. Fortunately, Dayton Children's offers 24-hour remote monitoring for NICU families. The webcam system, NICVIEW, allows parents and family members to see their baby when they are away from the hospital. Not only did NICVIEW provide a sense of reassurance to Danielle and Aaron, but the on-demand video streaming also supports mother-baby bonding.

tests and surgeries in the future

Sammy, as her family affectionately calls her, is just beginning her journey with The Craniofacial Center. She will likely have surgeries over the next few years for her craniosynostosis, cleft palate, and her webbed fingers and toes. Each surgery will be led by Dayton Children's highly skilled craniofacial surgeons. It's also possible that as Sammy gets older, additional developmental concerns may become apparent and need further medical attention. She already attends different therapies at Dayton Children's that help her develop but also monitor her for any potential concerns so that they can be addressed appropriately. This coming September, Sammy has an MRI and CT scan scheduled to help guide the next step in her journey!

"We couldn't have chosen a better place for our daughter's care," exclaimed Danielle.

The Null family has been so pleased with the wrap-around services provided by Dayton Children's. The complex care provided by the clinical teams has exceeded their expectations.

The Craniofacial Center at Dayton Children's

From cleft lip to rare genetic disorders, our pediatric experts treat every patient with exceptional care and compassion. From medical needs to counseling, we explain your child's condition and answer all your questions while helping you understand your treatment options and make choices that are right for your family.

Learn more about The Craniofacial Center at Dayton Children's.