Published:
August 24, 2018
During Erin Ague’s pregnancy, she voiced her concern that the baby was not moving as much as he normally did. Prenatal ultrasounds had indicated some irregularities, including ventriculomegaly (fluid in the brain ventricles). Her doctor recommended inducing labor and delivering the baby by cesarean section at 37 weeks.
Finnegan was born at Women & Babies Hospital, where he was discovered to have multiple, complex medical issues, including tachycardia—a very rapid heart rate. He spent six days in the Neonatal Intensive Care Unit (NICU), where his neonatology team stabilized his heart and coordinated with colleagues at Children’s Hospital of Philadelphia (CHOP) to transfer his care.
At Children’s Hospital of Philadelphia, Finn was put on a CPAP (continuous positive airway pressure) machine to help him breathe until his lungs were more fully developed.
During his two-month stay, he was diagnosed with additional conditions; some of which were treated with surgery over the course of his first year, and others that will require ongoing monitoring as he grows.
Genetic testing revealed a rare syndrome called 22q11.2 microduplication, which is caused by an extra piece of genetic material on the 22nd chromosome. This condition has been associated with a high arched palate in the mouth, growth and muscle tone deficiencies, and brain or learning disabilities—all of which his doctors will watch for as he gets older.
The Children’s Hospital of Philadelphia has a long history of studying chromosome 22 and has the largest program in the country for 22q11.2 deletion, a related syndrome. Finn’s doctor is the physician who actually discovered the 22q disorder decades ago.
Now just over one year old, Finn has already completed two surgeries at CHOP for craniosynostosis, which will allow room for his skull to expand as his brain grows. He also had a shunt placed in his brain to help drain the fluid caused by hydrocephalus, which was first noticed as enlarged ventricles. His mother reports that Finn has been more playful and interactive since having these procedures.
Finn has also had surgery to correct an intestinal malrotation, a disorder that occurs in utero when the baby’s small intestine does not rotate properly as it develops, and was fitted with a feeding tube.
A Team of Specialists Close to Home
Today, Finn is a happy baby and adjusting well to life at home with his parents and big sister, Bridget. He has regular home visits with a physical therapist, an occupational therapist for feeding issues, and a nurse to check his vital functions.
In the next year, he will undergo two surgeries to implant a vertical expandable prosthetic titanium rib VEPTR on each side — a device invented by a doctor at Children’s Hospital of Philadelphia. The VEPTR will help expand Finn’s chest to improve his lung capacity.
Because of the complexity of his medical conditions, Finn’s team at Children’s Hospital of Philadelphia has included specialists in pediatric cardiology, gastroenterology, genetics, pulmonology, nutrition, general surgery, and ophthalmology.
Lancaster General Health’s affiliation with Children’s Hospital of Philadelphia allows the family to have follow-up appointments and ongoing care by a CHOP cardiologist, gastroenterologist, pulmonologist, plastic surgeon and other subspecialists at LG Health’s Suburban Pavilion, just a short drive from their home. This relationship ensures continuity of care for Finn and reassurance for his parents that all of Finn’s providers, including his primary care doctor, are in communication and working in collaboration to meet all of his needs.