Renae Kovacs may have been born without a soft spot, but her surgeons sure have a soft spot for her.
Found in only 1 out of 2,000 babies, Renae’s condition, called trigonocephaly (which is secondary to metopic craniosynostosis) causes the plates of a baby’s skull to fuse together too early to give the brain room to grow properly. Typical babies have a joint between the bone plates that allows for normal skull growth.
“We noticed that her forehead looked pointy around 2 weeks after she was born,” said Renae’s mom, Mindy. “When we mentioned this to her doctor, he said it was normal and when her skull fused, it would get better.
At Renae’s 2-month check-up, her doctor mentioned she may have craniosynostosis.
“He explained to us what it was and said to keep an eye on it,” Mindy said. “Of course, you know I went home and looked up everything I could.”
At Renae’s 4-month appointment, the doctor and her parents, Mindy and Bobby, agreed that her forehead still looked very triangular. He recommended a visit to Dr. Niyant Patel, a plastic and reconstructive surgeon at Akron Children’s Hospital, to see if the condition was affecting her brain.
“We couldn’t be happier with Dr. Patel,” said Mindy. “He sat there with us for almost 2 hours explaining craniosynostosis to us and what we were going to have to do to correct it.”
Dr. Patel performs the procedure in symphony with a pediatric neurosurgeon. For this case it was Dr. Tsulee Chen.
“It was a difficult, scary time for our family but I was so impressed with their attention to detail,” said Mindy. “Dr. Patel told us they put her hair in little pigtails all over so they didn’t have to cut any of her hair, which is very nice. They even made squiggly incisions so that her hair part won’t grow funny.”
As Mindy scoured the internet to learn more about the condition, she discovered the Cranio Care Bears support group. The group sent the Kovacs a special care package to help them get through their hospital stay.
“It was very helpful and a touching gesture,” said Mindy. “It meant a lot to us and it is nice to be part of a network, to know you are not the only one going through something like this.”
During the 4 to 4 ½ hour surgery, Dr. Chen cut pieces of Renae’s skull so that Dr. Patel could re-piece them, much like a jigsaw puzzle. The surgeons use stitches and little plastic plates that dissolve to hold the bones in their new position, allowing more room for the brain. Blood transfusions are common during this type of procedure, but Renae’s blood was recycled during the surgery and she received a medication beforehand that helped her avoid this.
Her parents sent a special bear they had made at Build-A-Bear back to the operating room with Renae. So now when she gets older, they can tell her that the bear watched the entire surgery.
“It was hard,” said Mindy. “Her little eyes were swollen shut for a few days. However at this age her nerve endings are not as sensitive as ours so they feel less pain. We were surprised. They sent us home 50 hours after the surgery with Tylenol and we only had to give her one dose. She didn’t seem to be in any pain at all.”
Renae took it all in stride and had a wonderful recovery. At her 6-month follow-up appointment, the Kovacs were especially excited to dress Renae in a special T-shirt the Cranio Care Bears sent them.
On the front, the shirt declares, “I’ve had work done,” and on the back it says, “I love my plastic surgeon.”
“We were excited to show Dr. Patel and the staff, because they have become like family to us,” said Mindy.
The outlook is good. Dr. Patel scheduled her next appointment in a year and thinks everything is healing well. He’s optimistic that Renae won’t need another surgery.
The Kovacs celebrated the birth of Renae’s little sister, Penelope, on Nov. 25.
“While of course we hope she doesn’t have to go through this procedure like Renae did,” said Mindy, “we do get great comfort knowing that Drs. Patel and Chen are there if we need them again.”