Family Education Is Important Aspect of Comprehensive Care at Comer Children's Hospital
Allison Domalewski wasn't sure if she should be concerned. Soon after her twins Logan and Layla were born, the west suburban mother noticed Logan's forehead protruded a bit, giving his head a slightly triangular appearance. She thought it could be related to her son's premature birth. But when she mentioned her worries to her pediatrician during the twins' four-month check-up, the doctor recommended that the family see a craniofacial specialist.
During normal prenatal development, the seams (called sutures) that connect the individual bony plates in an infant's skull stay open to accommodate early brain growth. A neurosurgeon at another hospital examined Logan and told Allison that the suture running from the top of Logan's skull to the middle of his forehead had closed too early. Typically this suture, the metopic suture, closes by the age of 9 months. The condition -- called metopic craniosynostosis -- affects the shape of the forehead and placement of the eyes. It can lead to pressure inside the head, learning disabilities, vision problems, headaches and/or seizures. Corrective treatment for this type of craniosynostosis involves open or endoscopic cranial surgery to redefine the shape of the frontal skull bones.
"I expected to hear that Logan needed to wear a helmet for a while," said Allison. "I didn't imagine that he would need surgery." When she left the neurosurgeon's office, she still had many questions and concerns.
Seeking more answers and a second opinion, Allison and her husband Jason made an appointment with plastic surgeon Russell Reid, MD, PhD, an expert in pediatric craniofacial surgery at the University of Chicago Medicine Comer Children's Hospital. Reid founded and leads the Craniofacial Anomalies Multidisciplinary Program (CAMP), a program that offers a team approach to the evaluation, diagnosis and treatment of children with craniosynostosis.
"Dr. Reid communicated completely and informatively," said Allison about their November 2012 meeting. "He explained everything well and showed us before and after photos of other patients."
Reid told the parents that, without surgery, the ridge in the middle of Logan's forehead would be noticeable throughout his life, possibly impacting his psychosocial development. And because the brain might not have adequate room to expand, there was a chance of increasing pressure within the skull, which could lead to developmental delays. Surgical treatment would improve the appearance of Logan's forehead and the position of his eyes as well as create enough room for his brain to grow properly.
"For every patient, we spend a lot of time on clinical examination and on teaching," Reid said. "We talk about the impact of the child's appearance over the long term. And we describe the risks and benefits of surgery. Our goal is to help parents make the right decision for their family."
Allison and Jason decided to move forward with surgery at Comer Children's. "On that day, we learned everything we needed to know to proceed," Allison said.
Before choosing a date, Reid brought in a pediatric neurosurgeon and discussed the importance of timing the surgery based on then 5-month-old Logan's bone development and growth. "For patients with this condition," Reid explained, "it is best to operate when the child is less than a year old." A child's skull bones are more malleable at that age and the patient has the ability to make new bone in the gaps left behind after surgery. Reid worked with his team to calculate the best time for the best result.
The surgery took place at Comer Children's on February 6, 2013, when Logan was exactly 8 months old. Working side-by-side, the two surgeons exposed and removed the frontal bone and the bone at the top of the eye sockets. Reid then meticulously reshaped and reconstructed the skull bones using tiny bone grafts that had been carefully harvested. According to Reid, designing the new frontal structure was "like putting together a puzzle with very small pieces."
Reid and his team gave the family updates throughout the surgery and, after five hours, the team reported the operation was over and everything had gone well. Logan spent one night in the Pediatric Intensive Care Unit and went home four days later.
"Logan was pretty much back to normal within a week of surgery," Allison reported. "He wanted to eat and play all of the time."