March 3, 2015
Texas Children’s Hospital recently hosted its first craniosynostosis reunion, bringing together 150 people who have been touched by a condition that causes one or more of the seams between the bones of a baby’s skull to close prematurely.
“For parents of babies with craniosynostosis, it is a scary and stressful time,” said Dr. Sandi Lam, a neurosurgeon and co-director of the Craniosynostosis Surgery Program at Texas Children’s. “Families want to know they are making the right choices for their little loved ones. Connecting them with other parents who are going through the same thing provides a level of support that is irreplaceable.”
At the February 7 reunion, patients who have had craniosynostosis surgery at Texas Children’s Hospital joined their families and gathered at the Meyer Building for a few hours of fun, games and camaraderie. Child Life specialists and volunteers from Neurosurgery and Plastic Surgery hosted sports-themed activities for the children while parents shared stories over coffee and kolaches. A group of mothers who had met and chatted about craniosynostosis online got to meet each other in person at the reunion and were thrilled to be invited to the same event.
“Families tell us this type of patient networking event is amazing because it proves they are not alone,” said Sandra Galvan, coordinator of the program. “They have no doubt we at Texas Children’s will be here for them, delivering superb care for their families, neighbors and friends in Houston and across the nation.”
Craniosynostosis affects one in 2,000 babies and usually requires surgery to separate the fused skull bones to achieve a normal appearance and to allow a baby’s brain to continue to grow and develop properly. Here at Texas Children’s, we have a team of specialists dedicated to treating craniosynostosis. Pediatric craniofacial plastic surgeons Dr. Laura Monson, Dr. David Khechoyan and Dr. Edward Buchanan and pediatric neurosurgeons Dr. Sandi Lam and Dr. Robert Dauser work together to provide the best care for children and their families.
In addition to having the highest quality surgeons on hand to correct the defect and a dedicated team to care for the children before and after surgery, Texas Children’s Hospital has formed a parent-to-parent network to match pre-operative patients’ families with post-operative patients’ families to support each other.
“It has been an incredible experience to see how generous, brave and wonderful our families are,” Lam said. “Many parents want to give back and share. The reunion gives them the opportunity to do just that.”
