Stories about: Our Patients’ Stories

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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Brother donates stem cells to sister battling leukemia

Gia Lesselroth (consent # 8036) is leukemia/transplant patient. For her visit she is accoompanied by her mother Marissa and her brother Logan who was her donor. With nurse Erin Santacroce, RN, BSN

On September 24, 2015, in a sixth floor room at Boston Children’s Hospital, 5-year-old Logan Lesselroth pressed the button that started the transfer of his newly harvested blood stem cells to his 3-year-old sister, Gianna.

“This,” Gianna told him, “is a gift from your body.”

The path to that moment and the stem cell transplant’s potential to cure Gianna of her relapsed leukemia was anything but straightforward. Logan has a genetic condition called medium-chain acyl-CoA dehydrogenase deficiency (MCADD), which makes it difficult for his body to convert sugar to energy. Would his metabolic disorder be passed to Gianna? Would the disorder make it too risky for Logan to have his stem cells harvested?

Diagnosed with acute lymphoblastic leukemia at the age of 4½ months, Gianna achieved a remission that lasted two years. In May 2015, the leukemia was back. With that, Mike and Marissa Lesselroth sought options for their daughter in their home state of Florida and beyond. “We talked to her doctors in Florida, and they agreed that coming to Dana-Farber/Boston Children’s was the best choice for Gianna because they offered a lot of treatment options for relapsed leukemia,” Mike says.

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Faces of adult congenital heart disease: Marathoner, mom, researcher

Spartan race 2Most people with congenital heart disease (CHD) are diagnosed at birth. But Dr. Kornelia “Nelly” Polyak found out about her condition in medical school.

After a lesson on cardiology, the teacher demonstrated an EKG on Nelly. Everyone was surprised by the abnormal result, and an echocardiogram confirmed that Nelly had CHD.

“I didn’t believe it at first. I was active, otherwise healthy, and felt fine — how could I have a heart problem,” says Nelly, who modestly describes herself as “more active than most people.”

Soon she learned she had an atrioventricular canal defect (ASVD), a hole in her heart that disrupted proper blood flow and also affected her mitral valve.

“It was pretty big,” says Nelly, “and I was warned my heart could fail before my 40th birthday if I didn’t have surgery.”

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Carson Domey for president!

Carson Domey OFG Crohns

Most 11-year-old boys don’t own multiple dress suits, nor have they testified at a State Capitol. But Carson Domey is far from typical. As his Twitter handle suggests (@POTUSIT), he’s in training to be President.

This year has been a particularly productive one for Carson, as he takes cues for his 2044 presidential campaign. Five years ago, though, Carson was thinking more about getting a diagnosis than practicing politics.

Starting around age 6, Carson’s cheeks and gums would mysteriously become puffy and red. “It would come and go, and was something that only a mom would pick up on,” remembers Carson’s mother, Michelle. She took him to a dentist and an otolaryngologist, but the symptoms were always gone by appointment time, so neither doctor was concerned.

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