Margaret Lacey and Verdell Wright learned that their baby, Marcel, had cracked his skull to allow his brain to grow normally, and would need complex surgery to put it back together. I was terrified. But the Rannemede, New Jersey couple found both comfort and unparalleled expertise at K. Hobnanian Children’s Hospital. There, the doctor was able to perform the operation in one step, and the rambunctious son was able to thrive.
Marcel was born in April 2021 with craniosynostosis. Craniosynostosis is a genetic disorder in which the bones of the skull join together too quickly. Because the skulls do not usually fuse until the age of two, this abnormality can limit brain growth and lead to intellectual disability. Marcel had an unusual subtype called ectopic synostosis, which gave him a pointed forehead and slanted eyes. About 1 in 2,500 babies in the United States are born with craniosynostosis, according to the Centers for Disease Control and Prevention.
Before coming to Hackensack Meridian Children’s Hospital, Margaret and Verdel felt discouraged and dismissed by other hospital professionals. Marcel was told he would need two separate surgeries to repair the skull defect and would need to wear a helmet 24/7 for six months. between surgeries. “It didn’t suit us,” recalls Margaret. “For a major operation like this, you need multiple opinions and someone who can explain in detail what was really going wrong.”
comfort and education
Mothers found just what they needed in Lawrence Daniels, M.D., Chief of Pediatric Neurosurgery and Director of the Craniofacial Clinic at K. Hobnanian Children’s Hospital. His amazing approach to treating craniosynostosis includes multiple in-depth conversations and video parent education explaining diagnosis and surgery. Dr. Daniels even connected Margaret and Burdell to other families whose children had the same surgery.
“The purpose of my initial meeting with the family is not to persuade or convince the family about any treatment. The goal is to inform, educate, and comfort,” Dr. Daniels said. increase. “A kinship relationship is created. My patients and their families are treated as if their own neighbors are taking care of them.”
Marcel’s parents were overjoyed to learn that Dr. Daniels and his colleagues could actually perform Marcel’s surgery in one operation instead of two. The one-step procedure of essentially opening up Marcel’s skull and putting it back together like a puzzle “quickly accomplishes what we want, giving our developing brain the space it needs without delay.” says Dr Daniels. “We can do more aggressive and thorough surgery with the same amount of risk. Or, in many cases, the following Risk is higher than other surgeons who perform two-stage surgery. It depends a lot on the training and experience of our surgeons, but we have one of the best teams in the world. ”
recovering well
Marcel had his surgery in October 2021, when he was seven months old. Margaret and Burdell were nervous, but the trust they had with Dr. Daniels and his team put them at ease. Dr. Daniels and others also arranged for all comforts, including housing at the local Ronald McDonald House. As expected, the baby was unable to open her eyes because of the swelling immediately after the surgery, but she was able to hear and respond to her mother’s voice, which was a great relief and comfort to the family. .
Within days, baby Marcel was sent home, where he quickly resumed his daredevil behavior. “We were worried he might bump his head or fall, but Marcel didn’t care,” recalls Margaret. “He was still chasing his toys. After two days at home we were confident he would be fine.”
Marcel, now 2, runs noisily around the house, but his scars are so small that his parents wonder if he’s ever had skull surgery. Regular monitoring by Dr. Daniels shows that Marcel is recovering and developing normally, and Marcel is already learning the alphabet and counting.
“He’s a tough little guy,” says Dr. Daniels. “He has guts and courage and we love it. It’s all the reason I did this.”