A salute to Noah’s heroes

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Noah Hamm has escaped death more times than his mother Danielle can count. And he’s only 3.

Since Noah was born there have been three constants in his life: Noah’s knack for near misses, his family and a neonatologist/pulmonologist who’s always there with the right care for Noah … and the right words for his family.

“I tell Larry [Dr. Larry Rhein] he’s our George Bailey,” says Noah’s mom Danielle.

Larry gave me hope. Even when things were bad, I always felt better when Larry was there.

Noah was a 29-week twin when Danielle’s water broke prematurely. “The only condition I thought I had to worry about after having a STAT C-section was prematurity,” she recalls.

Six hours after Noah and his sister Dakotah were born at Brigham and Women’s Hospital, specialists told Danielle and her husband Brendan their newborn son needed surgery for esophageal atresia, a gap in his esophagus, and tracheoesophageal fistula, an abnormal connection between his esophagus and trachea.

Nurses brought Noah to Danielle to let her hold her son before transferring him to Boston Children’s Hospital. “They weren’t sure he’d make it through the first night,” says Danielle.

But Noah did make it through the night and through his first surgery, when Dr. Terry Buchmiller, a surgeon at Boston Children’s, repaired Noah’s tracheaesophageal fistula and placed a G-tube to deliver nutrition directly to Noah’s stomach.

A few days after Noah’s first surgery, he was was diagnosed with patent ductus arteriosus; the path between his pulmonary and aortic valves did not close after birth as it should have.

Two weeks later, Danielle could see that Noah didn’t look quite right. She grabbed Dr. Anne Hansen, medical director of the Boston Children’s Neonatal Intensive Care Unit (NICU), and doctors discovered the hole in Noah’s heart had blown open. He needed emergency heart surgery.

Rhein made his first appearance in Noah’s life that night.

Noah’s next surgeries

“Noah was dying,” Danielle recalls. “Larry and Timmy Ho (a neonatology fellow) kept him alive.”

Rhein reassured Danielle, “He’s going to make it.”

Danielle clung to Rhein’s words. Hours later, Noah’s bowel perforated, and he needed a second emergency surgery that same night. It was Noah’s last chance.

Rhein made sure Danielle could see her son before surgery. “No one is giving up on you,” she whispered to her son.

Just before Noah’s surgery, Rhein told Danielle and Brendan. “I’ll see our buddy next week.”

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Danielle, Noah and Rhein at a checkup

“Larry gave me hope,” says Danielle. “Even when things were bad, I always felt better when Larry was there.”

But Rhein says it’s Danielle and Brendan, a former Marine currently serving in the reserves, who have pulled through for their son. “This family has the resilience and commitment that make all the difference for kids like Noah,” says Rhein.

Noah slowly recouped during his five-month NICU stay. He required multiple intubations and extubations, and he battled infections.

In June 2013, Rhein and Buchmiller recommended the surgery to repair Noah’s esophageal atresia. Danielle and Brendan wanted to wait until Noah was bigger, but the gap was doing too much damage to their son’s lungs.

Danielle was frightened but agreed. The surgery went well, but it wouldn’t be Noah’s last.

Shortly before Noah was discharged, a swallow study showed Noah had a laryngeal cleft (a gap between his esophagus and larynx) and a cyst in his nose, compromising his ability to swallow formula. He would need another surgery.

Dr. Reza Rahbar, Associate Otolaryngologist-in-Chief, cautioned Danielle and Brendan that Noah might need a tracheostomy (a surgical procedure to provide access to Noah’s windpipe and placement of a breathing tube). “I was so afraid to go ahead with another surgery for Noah,” Danielle says.

Rhein called Danielle. “I could hear his kids playing in the background. He explained cold and flu season could be really dangerous for Noah because of his cleft.”

Danielle and Brendan followed Rhein’s advice and went ahead with Noah’s next surgery, setting the stage for the next chapter in Noah’s life — going home.

Noah graduates from the NICU

“Keeping Noah at home alive was scary. He had a feeding tube and apnea monitors, and there were so many medications,” recalls Danielle.

“I know Danielle was scared, but I was confident Noah would do well because Danielle and Brendan are there day and night for their children. They aren’t paralyzed by fear. They have learned to care for Noah and Dakotah’s complex medical needs — from managing medications to deciding when to take Noah to the emergency room to juggling multiple follow-up appointments with specialists,” says Rhein.

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Dakota and Noah at play

Noah’s first winter brought new challenges.

“I worried so much about infection control because I knew a cold meant the hospital for Noah.”

Danielle limited Noah’s contact with the outside world … with one exception. One Saturday a month, she brought Noah and his sister to the Home Oxygen Parent Exchange (HOPE) program. Rhein started the monthly program — part music class, part support group — for fragile infants and toddlers and their parents to provide a social outlet, a chance to connect with other parents going through similar issues and a place feel normal.

Despite the family’s extreme caution, Noah was in and out of the Boston Children’s emergency room during the winter. Rhein would call ahead, summarizing the toddler’s complicated history for emergency room staff. He also made sure Noah was placed in a private room to minimize his risk for further infection.

A few months later, in December 2014, Noah faced another crisis.

His trachea collapsed, and he stopped breathing. “It was my worst nightmare.” Danielle performed CPR on her son for two minutes on her bedroom floor.

When she and Noah arrived at Boston Children’s, Rhein delivered the news. Noah needed another surgery — an open-chest operation. “I knew in my heart Noah needed it, but I was so scared.”

Rhein appeared. “What would you do if Noah were your child,” she asked “Noah needs the operation,” he told her.

“I didn’t need to hear any more,” says Danielle.

“Since then, Noah has been a new child,” says Danielle. His colds aren’t nearly as threatening. He’s talking, running and playing. “A child with any one of Noah’s conditions could have done poorly. The Hamms and the thousands of Boston Children’s families like them are a big part of why these kids are doing so well,” says Rhein.

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It’s a wonderful life.

 

Learn more about the Boston Children’s NICU Family Resources.