Stories about: Cardiac Neurodevelopmental Program

Nathaniel’s heart: One for the record books

care for congenital heart defect

As 3-year-old Nathaniel Wesley nervously watched the big machine move toward his chest, he spotted a familiar face: It was the cartoon character Barney — in sticker form. “Give Barney a kiss!” his parents urged, and he smiled at the friendly purple dinosaur while the scanner took images of blood flow in his lungs.

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Our family’s journey of the heart

Nicolas and twin sister EmmyWhen our son Nicholas was 5 weeks old, we brought him and his twin sister Emmy to our pediatrician for what we thought was a routine well visit. Though the twins had been born four weeks early, Nicholas had only been in the neonatal intensive care unit (NICU) for a few days with low blood sugar and jaundice. Both babies seemed healthy and we had no major concerns.

However, as we watched our pediatrician listen to Nicholas’ heart and pulse, we realized something wasn’t right. He told us the pulse in Nicholas’ lower extremities was weaker than the pulse in his upper body. He suspected Nicholas might have coarctation of the aorta and referred us to our local heart center, where they confirmed the diagnosis and immediately scheduled us for surgery at Boston Children’s Hospital.

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The many adventures of Wesley: Specialty care helps toddler with heart disease reach neurodevelopmental milestones

Will and Alicia Ethridge knew their unborn son would need complex open-heart surgery soon after birth, due to a serious congenital defect that was detected in utero.

Wesley suffered from a genetic form of cardiomyopathy, which meant the walls of his heart muscles were thickened, and blood flow to the left side of his body was restricted.

The knowledge about their son’s disease prepared them for many things about the impending medical journey (including arranging for cardiac surgery at the Boston Children’s Hospital Heart Center, just a few hours’ drive from their home in Maine) but there were many more things about the months to come that they did not expect.

Immediately after birth in October 2013, baby Wesley was transferred to the (CICU) at Boston Children’s. His case quickly became more complicated than anyone had anticipated.

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The heart and the head: Meeting milestones after pediatric heart surgery

20160616_Silas-13for blogWhen their unborn son Silas was diagnosed with congenital heart disease at 22 weeks gestation, Montana and Michael Green knew he faced a long road. Though their primary concern was Silas’ health they also worried their son might face developmental delays, a common side effect following infant heart surgery.

Silas was diagnosed with double-outlet right ventricle (DORV) , a complicated abnormality in which the pulmonary artery and the aorta — the heart’s two great arteries — both arise from the right ventricle. This disrupts the flow of oxygenated blood throughout the body. DORV is often associated with other cardiac defects, such as a ventricular septal defect (a hole in the heart) or pulmonary vein stenosis (a narrowing or blockage of the passageway to the lungs).

Knowing Silas would need the most advanced cardiac care, Montana and Michael decided to travel from Cranston, Rhode Island, to deliver him at Brigham and Women’s Hospital in Boston. After birth, he was immediately transferred to the Heart Center at Boston Children’s Hospital, where he spent the first six months of his life. During that time, he had three heart surgeries and multiple cardiac catheterizations to correct his various anatomical issues and complications, which included complete atrioventricular canal defect and double outlet right ventricle. Today, at 6 months, Silas’ heart is functioning well, and his cardiac and developmental prognoses are promising.

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