A second chance for a baby with a life-threatening brain cyst

Photo courtesy of Jennifer Hammond
Photo courtesy of Jennifer Hammond

Other than being born a little early—at 37 weeks—everything started out fine for Liam Hammond. “He was a healthy baby, it was a healthy birth, and he was progressing and meeting his milestones,” says his mother Jennifer.

But at his 4-month-old check-up, “Something about his head looked different to me.”

Liam’s head circumference was normal, though, and he was in the same head-growth percentile as at his last visit. The pediatrician suggested Jennifer keep watching it.

Two weeks later, the family left for a seaside Memorial Day weekend vacation. “I was pretty sure his head was swelling,” Jennifer says. “No one else could really see it, but the distance from the top of his eyebrow to the top of his head looked wider. By Sunday evening, he was very fussy, and it seemed like the vein down the center of his forehead was more prominent.”

Jennifer and her husband decided to cut their weekend short, leaving Monday morning rather than evening. Jennifer noticed that the fontanelle at the top of Liam’s head—where the bones of his skull had not yet fused together—was no longer soft.

Hours later they arrived at their local hospital, which took a CT scan. “The emergency room doctor came in and looked as white as a ghost,” Jennifer recalls. “She said, ‘Your baby has a mass in his head.’ She had already arranged a transfer.”

“He could have a 50-50 shot”

In the wee hours of Tuesday morning, a neurosurgeon at the second hospital told the Hammonds that Liam had a large cyst adjacent to his brainstem. “He said, ‘I’ve only seen it three times in this location, and I’ve never operated on it in this location. He could have a 50-50 shot,’” Jennifer recounts. “I looked at my husband and said, ‘As a mom, I can’t accept this, I’m sorry.’”

She searched the Internet from Liam’s room in the pediatric intensive care unit and was led to Alan Cohen, MD, Boston Children’s neurosurgeon-in-chief. He returned her call within two hours.

Liam’s neurosurgical care team: L-R: Kristen Padulsky, RN, Alan Cohen, MD, William (Liam) Hammond, Jennifer Hammond, Andrew Hammond, Jennifer Klein, NP, Scellig Stone, MD, PhD
Liam’s neurosurgical care team: L-R: Kristen Padulsky, RN, Alan Cohen, MD, William (Liam) Hammond, Jennifer Hammond, Andrew Hammond, Jennifer Klein, NP, Scellig Stone, MD, PhD

Once he heard Liam’s story, Cohen encouraged the family to stay put. He believed Liam had dangerously elevated pressure inside his head. “I’d be happy to consult on his case,” he told the Hammonds. But they were insistent, so he said, “Let’s start with the MRI.”  Jennifer and her husband Andrew uploaded Liam’s scan to a secure website.

Cohen’s concern about a transfer increased. The cyst was pressing on Liam’s brainstem, causing hydrocephalus—a back-up of fluid in his brain—and raising the pressure inside his head to dangerous levels. This was also evidenced by Liam’s extreme irritability and his gaze, which was cast downward.

“Liam was a very sick child,” Cohen says. “That much pressure in his head is a life-threatening, ominous sign. His anterior fontanelle, which is usually nice and soft, was rock hard, tense, bulging up, like a pressure cooker. I didn’t think it would be safe to transfer him.”

The Hammonds were willing to take the risk. “I know it sounds cliché,” says Jennifer, “but I knew in my gut that if he stayed there, it was not going to be a good outcome.”

Cohen finally agreed, and Liam was Medflighted to Boston Children’s, accompanied by Jennifer.

Relieving the pressure

Liam_cohen“About 15 to 20 minutes after we got there, Dr. Cohen walked in, put his hand on my arm and said, ‘Welcome to Boston.  I’m going to do my best to help him.’ He showed concern for Liam as a little boy, not just a patient with a medical condition. He had genuine compassion.”

Liam was quickly brought to the operating room. To relieve the pressure on his brain, Cohen and his team made a small incision in the back of Liam’s scalp and placed a temporary drain in one of the brain’s fluid-filled spaces, or ventricles, to drain off the fluid. They then set about removing the cyst, which was trapping the fluid at the base of Liam’s brain like a stopper in a sink.

“It was more serious than we had anticipated,” he told the family afterward. “When we opened Liam’s skull, the cyst started ‘delivering’ itself like a baby: it started pushing out of his head.”

Liam improved almost immediately: his irritability went away, and he was alert. His postoperative MRI scan showed that the pressure inside his head had dropped dramatically.

But five days later, he began crying and vomiting. A repeat scan showed that he still had hydrocephalus. “Even though we removed the cyst, some kids develop hydrocephalus from a blockage farther downstream in the system,” Cohen explains.

On June 9, Cohen and his team operated again. This time, they placed a permanent shunt in Liam’s brain to drain the excess fluid.

“It wasn’t the plan, but we knew Dr. Cohen had Liam’s best interest at heart,” says Jennifer. “Liam was never treated as a number, but as a little boy they had taken under their wing. They were going to make sure that he would have the best possible outcome.”

A different story

The next day Liam’s smile returned.  A week later, he was alert, eating well and ready to go home, and he’s remained happy and healthy ever since.

Liam shortly before discharge
Liam shortly before discharge

“He’s developing nicely and is completely normal,” says Cohen. “This was a life-threatening illness, but Liam will have a normal life.”

On January 5th, Liam celebrated his first birthday.

“I’ve been reflecting on how different our lives could have been had Dr. Cohen not intervened and made a very different story for Liam,” says Jennifer. “He took the time to give a little boy a second chance. Under normal circumstances, we would have been expected to accept the local expert. We learned that when it comes to critical health care, you have to advocate intensely for your child.”