Stories about: laryngeal cleft

Trusting their instincts: Family finds help for laryngeal cleft

laryngeal cleft treatment

For some kids, the hospital can be a scary place, where even doctors with the best intentions poke, prod and serve up yucky-tasting medication. But for three-year-old Jack Steinberg, a visit to Boston Children’s Hospital is worth the trip from his home in Great Neck, New York. “No, it’s really fun,” Jack’s mother, Jessica, recently overheard him telling his older brother, Henry, who isn’t a fan of doctor visits. “They give you toys and stickers there!”

Jack’s cheerful attitude seems at odds with his recent health challenges. In fact, says his father, Noah, “If you saw him walking down the street, you’d never know anything was wrong with him.”

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A salute to Noah’s heroes

premature-twins

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.

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Hear me roar: A mother hunts down answers for her son

If it’s true that raising boys is not for the fainthearted, then Nicole Laws is truly lionhearted. A nurturer and a protector, beautiful and strong, this mother of four boys will hunt down the best solution to a problem … no matter what stands in her way.

Mason was born on Jan. 28, 2011, in Syracuse, New York. A month premature, he struggled with eating and breathing, but Nicole wasn’t overly worried. “This was our fourth child. The first three had reflux, so I was thinking, ‘This will be a piece of cake!’” Mason was observed for a few days at the local hospital and sent home.

Unfortunately, Mason’s issues persisted. Nicole and her husband Cliff had to hold their son in just the right position and give him frequent breaks to feed him. Sleeping was a struggle, to say the least. “Mason couldn’t tolerate laying flat,” remembers Nicole. “He would sleep on top of me sitting in a chair — all night long.”

We wouldn’t be where we are now if I didn’t push hard for answers and say ‘no’ when I felt something wasn’t right. ~ Nicole, Mason’s mom

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