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.

Helping Silas meet developmental milestones

“Our big developmental concern with Silas was making sure his environment was conducive to brain development,” says Montana.“He’s had a lot of stimulation in the cardiac intensive care unit, what with the bright lights, sounds and painful procedures. He’s also been on a lot of drugs. I was worried we were forgetting about his milestones.”

Psychologist Samantha (Sam) Butler, PhD, of the Cardiac Neurodevelopmental Program, worked with Montana to figure out Silas’ developmental needs and how to support them in a hospital setting.

Sam visited Silas several times a week. After each visit, she provided a sheet summarizing Silas’ developmental goals and strategies for working toward them. Montana posted these notes next to Silas’ bed.

20160616_Silas-15for blog“Sam’s notes were a reminder that while Silas was a patient, he was still a baby, and he needed things. Yes, the first priority was his heart, but he also needed to meet developmental milestones. Sam was a really good advocate for that.”

Montana recalls a time when Silas was struggling on the cardiac inpatient floor. “Silas was having a really hard time and was really uncomfortable,” she says. “Sam was good at coming in and saying, ‘This is what he needs: a dark room, a cool temperature, a quiet space.’ I think without Sam, we wouldn’t have known what he needed.”

Later on, when Silas was suffering from severe reflux, Sam helped Montana learn how to position her son safely on his belly, which made him much more comfortable. Sam also taught the family what Montana calls “the little things that we wouldn’t have thought of,” like reading aloud to Silas and playing music.

“That touch is so important”
Montana is probably most grateful to Sam for teaching the family how to hold Silas, even when he was very sick and hooked up to machines. “It’s so overwhelming in intensive care, and you just say, ‘I want to hold him. I want him to be held.’ And it seems like you can’t touch him. But even when we couldn’t pick up Silas, Sam showed us how we could get close to him and snuggle him. She also helped our daughter Logan, who is 6, get close to him and eventually hold him. That touch is so important. Now everyone tells us he loves to be held, and that’s so unusual for a cardiac baby. And I think that’s because of [Sam].”

Hope for the long journey ahead

After nearly six months in the hospital, Montana and Michael are preparing to take Silas home. He loves stroller rides and cuddles and playing with his big sister, and Montana looks forward to more of “all those normal baby things we haven’t had a chance to do till now.”

Silas struggles with developmental delays (for example, he is not yet babbling or sitting independently). With Sam’s help, Montana and Michael are focused on helping him meet developmental milestones and goals. He’s learning to reach and grasp, coo and sit up.  Montana is confident Silas will continue to grow and learn with follow-up care and direction from Sam and the rest of the Cardiac Neurodevelopmental Program team.

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Learn more about the Boston Children’s Cardiac Neurodevelopmental Program.