Baby needs vent and trach support just like his dad did years ago

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

When Greg Larrabee and Allie Brown went in for a 21-week ultrasound of their baby last November, Larrabee was adamant about one thing: “If there’s anything wrong, we’re going to Riley.”

Spoken like a first-time father-to-be who has his own Riley Children’s Health story.

There was something wrong. In fact, it was the same condition Larrabee was born with and treated for 33 years ago at Riley.

Their son, Roman Larrabee-Brown, was born in the Riley Maternity Tower on April 5 with a small thoracic circumference with bronchial and tracheomalacia, which occurs when the cartilage in the windpipe (trachea) and the breathing tubes in the lungs (bronchi) become weak and floppy. Instead of staying rigid, these airways collapse during breathing or coughing, which severely restricts airflow.

“His airway is a little floppy, and he needs extra support and pressure to get oxygen to his lungs,” Brown said. “That’s what the trach is for. Everything else is great. His lungs are great.”

Larrabee’s niece and nephew also had trachs to help them breathe, just as Larrabee did as a baby and toddler. Dr. A. Ioana Cristea is Roman’s pulmonologist.

“I was on a trach and a ventilator until I was 2, when I had a tracheal reconstruction,” Larrabee said. “Roman is doing significantly better than I did in the ’90s. Vents then were not what they are today.”

Larrabee’s father, who visited recently, told his son, “He looks way better than you did.”

As he leans in to give his son kisses, Larrabee acknowledges that it is sometimes hard to wrap his head around the situation, if only because as a parent, you want better for your children than your experiences.

“Just to sort of clone yourself is not exactly what I wanted, but he’s been great, and the upside is we’re 33 years in the future and the vents are much more superior,” he said.

“We really did clone him,” Brown joked, as she settled in to hold Roman while he finished his feed Monday afternoon. “He’s an exact little clone all the way down to his tiny web toe. Greg has it on the same spot.”

Currently, Roman is in the PICU, following a two-month stay in the NICU at Riley, but he is making progress toward the couple’s goal to get him home soon. And every day, they check more things off a list that enables them to play an active role in his daily care.

“We are working through things to find the sweet spot on his vent, then we can transition to the home vent,” Brown said. “We are not scared of the trach or the G-tube. We’ve been hands-on since the beginning.”

Roman, who had G-tube and trach surgery May 29, has already started occupational and physical therapy, with his parents by his side.

Over the weekend, extended family visited, as did his primary nurse from the NICU, Kelsie Walter, who now carries an honorary “auntie” title.

Walter and Brown created plenty of crafts during Roman’s stay in the NICU. It’s one way to document his journey, Brown said.

“It was such an absolute privilege and joy to work with Roman,” Walter said. “I took care of him for the first time the day after he was born, and then every one of my shifts after that until he went to the PICU.”

While she misses taking care of him, she is delighted to see him growing and getting stronger.

“His parents do an amazing job advocating for and loving him. I cannot wait for the day I get to wave goodbye as they go home. I don’t get to take care of him in the same way anymore, but I still love cheering them on every step of the way.”

PICU nurse Grace McGloin, who was caring for Roman on Monday, said his parents are comfortable taking a leading role in his care.

“It’s really nice to see parents so involved,” she said.

Brown and Larrabee are grateful they are able to be at the bedside – one or both of them throughout the day. They live nearby and their employers have worked with them to make it possible.

They also are grateful for the highly skilled care he has received every step of the way.

“Ever since he was born, we’ve had the best care in the world – in the NICU and transitioning to the PICU after surgery,” Brown said. “All the doctors have been amazing and supportive. We are very detail-oriented, analytical people, and we might come on a little strong, but we just have to be his biggest advocate,” she added.

“We know him best, and I know what’s coming,” Larrabee said, adding that they want to be fully prepared for any scenario once they get home.

The new parents have been in learning and advocacy mode since the beginning.

“We knew he was going to be medically complex, but there’s not really time to freak out,” Brown said. “We have to learn all of this. We have to be on top of it.”

And they don’t shy away from the challenge.

“We are ready for all of the next steps,” she added. “We are so excited to go home and start our next adventure with Roman.”

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