Stories about: Cardiac Neurodevelopmental Program

Experience Journal: A bereaved mother’s lessons from the heart

Jessica with EthanJessica Lindberg’s son Ethan was a brave heart warrior whose journey at Boston Children’s Hospital began before he was even born. At 20 weeks, they learned he had aortic stenosis and evolving hypoplastic left heart syndrome (HLHS). At 22 weeks Ethan was the 30th baby to have an in-utero procedure to open his aortic valve and relieve pressure in the left side of his heart.

By the time Ethan was 2, he’d had four open-heart surgeries. He was also having feeding problems, developmental delays, and was struggling with executive functioning and spatial tasks. Like many other parents of children with congenital heart defects (CHD), Jessica wanted Ethan to thrive as well as survive — to make sure he had the skills to eat, walk, grow and socialize.

Read Full Story | Leave a Comment

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.

Read Full Story | Leave a Comment

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.

Read Full Story | Leave a Comment

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.

Read Full Story | Leave a Comment