As the World Shut Down: Emilia’s Story

Then things became more surreal.

Brittaney noticed a ridge down Emilia’s forehead, and started researching what it might be. Through “midnight Googling” and a craniosynostosis Facebook group, she heard about Jonathan Martin, MD, FAANS, head of the Neurosurgery Division at Connecticut Children’s.

She turned to Emilia’s pediatrician, Mina Farkhondeh, MD, FAAP, at Pioneer Valley Pediatrics, for trusted advice. Pioneer Valley Pediatrics is part of Connecticut Children’s Care Network, a partnership that ensures families have easy access to the best pediatric specialists. 

“Since I had heard all about the safety measures at Connecticut Children’s, I was confident in reassuring the family that it would be safe to take Emilia there, even during the coronavirus pandemic,” Dr. Farkhondeh says. And she knew exactly which specialist they needed to see: the same Dr. Martin who Brittaney had in mind. “I know the excellent care Dr. Martin provides,” Dr. Farkhondeh says, “and my patients consistently tell me he explains everything very thoroughly.”

When Dr. Farkhondeh shared her recommendation, Brittaney replied, “That’s exactly who we want to see.”

“We were counseled and comforted”

Because of the pandemic, the Galarneaus first met Dr. Martin virtually. Brittaney sent Dr. Martin photos of Emilia’s skull using MyChart, available on Connecticut Children’s mobile app. Then they had a Video Visit for Emilia’s physical exam. Dr. Martin diagnosed Emilia with craniosynostosis, a birth defect in which the bones in a baby’s skull join together too early, eventually causing problems with brain growth and head shape. Emilia’s case required surgery.

Dr. Martin talked Brittaney and Eric through the options, and shared his screen to show them a comparison chart. Because Emilia was diagnosed at such a young age, they were able to choose a minimally invasive option: an endoscopic procedure that would go through Emilia’s soft spot and separate the fused bone plates in her forehead.

Even over video, Brittaney and Eric felt supported.

“We were counseled and comforted,” says Brittaney. “Dr. Martin embodies kindness. He was so thorough with how he explained things to us, and genuinely seems to care.”

At the time, non-emergency procedures and surgeries were paused due to COVID-19. While the family waited, they stayed in touch with Dr. Martin’s team via MyChart. Whether it was questions about Emilia’s skull, or a letter for their insurance provider, or help getting the helmet Emilia would need after surgery, they received responses right away, usually within a couple hours.

When elective surgeries opened back up again in May, Emilia’s was among the first to take place.

“I never once felt alone”

When surgery day came, visitor restrictions only allowed one parent to accompany Emilia.  Brittaney and Eric decided that Eric would stay home with their boys, and Brittaney would take Emilia.

“I worried endlessly about caring for Emilia alone,” says Brittaney. But once she arrived at Connecticut Children’s, she says, “I never once felt alone. Every person was so kind and would do anything that I needed.” The nurses held Emilia and kept her calm while Brittaney ran to the café to finally get something to eat. A security guard tracked down a nurse to answer her questions. Dr. Martin checked in before and after the procedure.

The surgery lasted a little over two hours, and throughout it, Dr. Martin’s team sent Brittaney messages on her phone, via the EASE app. “It would ding and say, ‘Surgery’s begun, everything’s going great,’ and ‘Emilia is asleep now, everything went perfectly.’” Brittaney took screenshots to send to Eric, so he could tune in from home.

“I would not have been able to hand my baby over to anyone else.”

Seven weeks after the surgery, Emilia – now just 4 months old – is happy and healthy. Her big brothers are “in love with her completely,” says Brittaney. “They argue about who’s going to hold her.”

She will wear a helmet for about a year – usually adorned with one of the many bows Brittaney purchased during pregnancy, which she’s since modified to clip to the helmet’s Velcro strap. Emilia’s care team at Connecticut Children’s checks in on her recovery by phone and MyChart. Whenever Brittaney has a question, she knows they’re just a quick message or call away.

“We are so thankful to Connecticut Children’s, and to Dr. Martin,” says Brittaney. “I would not have been able to hand my tiny 9-week-old baby over to anyone else. Every person we interacted with – from labs, to café staff, to intake, to the nurses, to those responsible for keeping the hospital clean – are truly our healthcare heroes.”

> Learn about Connecticut Children’s neurosurgery services