Family thanks neurosurgery team for lifesaving care

By Maureen Gilmer, Riley Children’s Health senior writer, mgilmer1@iuhealth.org

With their “guardian angel” watching from across the table, siblings Elisa and Julian Montalvo tease each other and talk over each other, weighing in on the best parts of the school day and why chocolate milk is better than white milk.

For Riley Children’s Health neurosurgeon Dr. Laurie Ackerman, it’s not an official office visit, but it is a chance to see the two kids behaving just like kids. Just like she always hoped they would. She peppers them with questions, even sharing stories of her own childhood as they talk.

Elisa, 8, and Julian, 5, were born with craniosynostosis, a condition where seams in the skull close too soon, which can prevent proper growth of the head and brain.

Elisa was diagnosed at about 6 months old, after moving to Indiana with her parents, Francisco and Victoria Montalvo, from Ecuador, South America.

“We were told we needed to see a neurosurgeon at Riley. We were scared,” Francisco said. “We came here, we met Dr. Ackerman and her team, and we were quickly comforted, knowing our daughter was in great hands.”

That was in 2016, and Elisa underwent cranial surgery at Riley to create space for her brain to continue developing. She recovered fully and is now thriving. A third-grader, she loves reading, drawing and playing tennis and wants to be a veterinarian when she grows up.

What Francisco and Victoria never figured on, however, was that their second child, Julian, would be diagnosed in utero with the same condition, as well as a complication called encephalocele, a rare form of brain tissue herniation, that would require additional surgeries and procedures.

On June 20, 2019, which happened to be Francisco’s birthday, Julian underwent a cranial reconstruction at Riley at just 10 days old. The following February, Dr. Ackerman and her team operated on Julian again, placing small metal devices called cranial distractors in his skull held together by screws. Those screws had to be turned a fraction of an inch each day by dad at home for the next month as the skull continued to grow.

It sounds positively medieval, Dr. Ackerman acknowledges, but it does not hurt. And while daunting for the parents, it was vital that they follow the care instructions at home.

“They knocked it out of the park,” the surgeon said. “Mom and dad rose to the occasion.”

The screws were removed in June 2020, on Julian’s first birthday. Up to that point, the little boy’s parents worried about him constantly and watched his every move.

Afterward, however, he quickly began walking, talking and bothering his big sister.

“I love him, but I still think he’s kind of annoying,” Elisa said about her brother.

The kindergartner disregards her comment as he twists in his chair in a Riley conference room. He tells those in the room that he loves math and basketball and wants to be an engineer like his dad.

“I like fixing things,” Julian said. “And I like dinosaurs.”

“I thank God, and I thank Dr. Ackerman and her team here that they’re both doing just fine now,” Francisco said, as his son bounced his head on his chair. Cautioning Julian to stop, Francisco quipped, “Your head is very expensive.”

They can laugh now, but the Montalvos will never forget the shock and fear they felt when each child was diagnosed.

“We never thought we could have the same thing with both kids,” Victoria said. “We were scared, and our family was in Ecuador. But the great people we met here made us feel at home and took good care of them.”

And while they say they look to Dr. Ackerman as their “guardian angel,” the surgeon says the family has an entire cheer squad at Riley.

“We have a whole team of people. I work with three terrific plastic surgeons. It’s also the anesthesiologists, the ICU nurses, the nurses in pre-op, the clinic nurses… It’s never any one person, it’s always a big team effort. You have a whole rooting section cheering you on and helping walk you through this,” she said.

“That’s exactly how it feels,” Francisco agreed.

The Riley team treats 40 to 60 kids with craniosynostosis every year, Dr. Ackerman said, and while having two children in the same family with the condition is more unusual, it’s definitely not the first time she’s seen it.

When she and her team meet with parents who’ve just learned their child has craniosynostosis, she explains the process, but in her mind’s eye, she is already seeing the end result – kids happy and healthy and going to school.

Naturally, it’s harder for parents to see that at the start, she said. But the process is proven.

“We see them a lot in the beginning, when everything is scary and new, and then hopefully we fade more into the background as the children blossom. That’s the way we like it.”

The Montalvo siblings, who return to Riley for yearly checkups, are definitely blossoming, their parents, Dr. Ackerman and the kids themselves agree.

“It’s a family success story. These kids have a marvelous set of parents,” Dr. Ackerman said.

As the holidays near, 8-year-old Elisa wants to share a word or two about gratitude.

“I’m really grateful for my family and for, well, having a life,” she said. “I’m thankful for my dogs and my friends and my school. And I’m very thankful for the doctors that helped me when I was little.”

Francisco echoes his daughter’s gratitude.

“As a parent, no one is prepared for this news,” he said. “Going through it a second time though, we knew the doctors, and somehow in that ocean of uncertainty we felt a lot of trust that we were in the place we were supposed to be and in the right hands.”

Photos submitted and by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org