Patient Stories

Lily's Story

LilyThis couldn't have gone any better. After having gone through something so unfortunate in Florida, I'm so happy to have it work out the way it did. They're miracle workers.

Lily was born as Hurricane Michael came barreling through the Florida Panhandle in October 2018. For Lily's mom, Torrye, the hurricane was a sign of the tumultuous years to come as she worked to get Lily the medical care she needed.

"A week after Lily was born, we were hit with a Category 5 hurricane that completely destroyed Bay County. Four houses on our block were demolished. It was utter devastation," Torrye recalls. "That was the start of the next few years to come."

When Torrye went to the obstetrician for her first post-delivery appointment, she pointed out to the doctor that Lily's head looked sloped. “It looked like the left side of her forehead was growing more than the right side of her forehead. It was just uneven," she says. "We hadn't taken Lily to a pediatrician yet because of the hurricane, so I decided to ask the obstetrician if she saw anything when Lily was born."

The obstetrician didn't notice any issues with Lily during the delivery. At Lily's two-month appointment, the pediatrician told Torrye they would monitor the issue, as it could just be the skull evening itself out. But at the four-month appointment, there was no change, so the pediatrician referred Torrye and Lily to a pediatric neurologist in Northwest Florida, two hours away. When the pediatric neurologist did a scan of Lily's skull, they found the bone on the right side of her skull fused too soon, a somewhat rare condition called craniosynostosis.

The skull is made up of several bone plates that are not tightly joined together at birth. The seams where the plates join are called sutures. As a child grows, the sutures fuse. For children with craniosynostosis, the sutures fuse too soon, sometimes even before birth. The baby's head stops growing in the area of the skull where the bones have fused. This causes the skull to have an abnormal shape and in some cases can lead to a build-up of pressure on the child’s brain. It is unknown what causes craniosynostosis, and the condition is extremely hard to diagnose in utero.

The pediatric neurologist referred Lily and Torrye to a pediatric neurosurgeon who called in a craniofacial surgeon. The craniofacial surgeon recommended performing cranial vault remodeling surgery when Lily was a year old when her skull bones have grown a little more. Cranial vault remodeling is a procedure where the fused skull bones are released and the skull shape is simultaneously re-contoured to provide the brain with more adequate room for growth.

In September 2019, Lily underwent six-hour cranial vault surgery. "Everything went great. She looked really good; even with the swelling from the surgery, her head looked great — round with no slope," Torrye recalls. "But when we came home, I noticed two red spots on the side of her head. She seemed more irritable."

"The next morning when Lily woke up, all the skin on her forehead was red and puffy. It wasn't just swollen; it felt like liquid underneath," she says. Torrye sent pictures of the swelling to the craniofacial surgeon. The craniofacial surgeon consulted with the neurosurgeon, who agreed to see Lily, who was now running a fever over 100 degrees.

"We left at four o'clock in the morning to go to the emergency room. When I picked her up, I put my hand behind her head, and it felt like touching a rotten tomato," she says. Panicked, Torrye and her partner Patrick cautiously made the two-hour trip to the emergency room. At the emergency, a CT scan showed her head was filled with fluid. Lily was rushed into surgery to drain the fluid. The doctors drained half a liter of infected fluid from Lily's head.

Ultimately, it was determined that Lily had a MRSA (Methicillin-resistant Staphylococcus aureus) infection, a severe bacteria that is antibiotic-resistant. She was kept in the hospital for the next 42 days and had 26 surgeries to get rid of the infection. However, the infection would not go away. The neurosurgeon suggested the infection might be in the skull bones that were operated on, and they would need to remove the skull bone to get rid of the infection.

"The MRSA had eaten through the soft tissue and was in the bone and the skin," she says. Because of the severity of the infection, the doctors removed the skull's frontal bones (the forehead).

Removing the frontal bones got rid of the infection, but it left Lily without a forehead. Frustrated and disenchanted with the care Lily had received, Torrye began to look for a new pediatric neurosurgeon and craniofacial surgeon to take over Lily's care.

"I'm originally from New Jersey. Whenever anything is medically wrong in the family, we always go to New York to find the best doctor," Torrye says. "My dad searched all the neurosurgeons and craniofacial surgeons in Manhattan, so once the infection got treated, we knew we would move on to somewhere else."

Her father found Dr. Mark Souweidane, a pediatric neurosurgeon at NewYork-Presbyterian/Weill Cornell Medical Center, and Dr. Thomas Imahiyerobo, a pediatric craniofacial surgeon at NewYork-Presbyterian/Columbia University Irving Medical Center. In December 2019, the family traveled to New York to meet with the doctors. Because of the complexity of her case, the doctors had to do virtual surgical planning (VSP) to create a surgical solution for Lily. During the virtual surgery planning sessions the CT scan data is used to create a 3D rendering of a child’s anatomy which can be manipulated in the computer software. Through this surgical planning method, Drs. Imahiyerobo and Souweidane were able to visualize how to give Lily a new forehead.

image of Lily dressed as batgirl

“In Lily’s case, her infection had really destroyed a large area of her cranial (skull) bone, precluding the use of standard reconstructive procedures. In these type of complex cases we rely not only on our extensive experience treating children with Craniosynostosis but also on advanced technology such as virtual surgery planning which can help us develop an innovative patient specific solution” says Dr. Imahiyerobo.

"Dr. Imahiyerobo said he'd use the bone from the back of Lily's skull to reconstruct her forehead," Torrye says. The doctors would then take bone from the other areas of the skull to create a spokes-on-wheel configuration that minimized the gaps and protected the areas of the brain responsible for executive functioning. "Because she's young enough, the bones would grow together, so she'll have a complete skull."

Lily was scheduled to have her surgery in March 2020, but then the COVID-19 global pandemic hit, and the hospital was forced to postpone all elective surgical procedures. Having to wait placed a strain on Lily and the family, who was in a critical developmental stage — learning to walk.

"Lily had a protective helmet, but she wouldn't wear it. When I put it on her, she would thrash around. I would get scared that I'd squash her brain. So I was just sitting, holding her, trying to be a protector all the time," Torrye says.

After several months of waiting, Torrye got the call to schedule Lily's surgery in July 2020. Lily would be one of the first pediatric patients to have surgery performed once elective surgeries restarted. In the operating room, Drs. Imahiyerobo and Souweidane used a 3D model of Lily's skull to map the bone placement during the surgery. They performed the forehead transfer and constructed a “brain cage” to protect the other areas of her brain. After the surgery, Lily was taken to the pediatric intensive care unit to recover. After a week in the hospital, Lily was able to go home, where she has had a successful recovery.

"This couldn't have gone any better. After having gone through something so unfortunate in Florida, I'm so happy to have it work out the way it did," she says. "They're miracle workers."

Dr. Imahiyerobo will continue to see Lily periodically until she's about five years old to ensure her skull is developing correctly. Today Lily is happy and healthy and thriving as a result of the innovative work of Dr. Imahiyerobo and Dr. Souweidane.