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. After Wesley’s initial surgery, he had five more, all before his second birthday. In February 2015, he fell critically ill and was listed for heart transplant. He received a new heart that May. While supporting their son through his various medical trials, Alicia and Will were simultaneously concerned about his neurological development. “There were very obvious delays right away,” says Alicia. Wesley was intubated during his first few weeks of life in the hospital, so he struggled with feeding for a while. Due to tightened muscles called contractures, he couldn’t raise his arms above his head, and...
Source: Thrive, Children's Hospital Boston - Category: Pediatrics Authors: Tags: Our Patients’ Stories Cardiac Neurodevelopmental Program Dr. Caitlin Rollins Dr. Samantha Butler Heart Center Source Type: news

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Source: ClinicalTrials.gov - Category: Research Source Type: clinical trials
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Source: ClinicalTrials.gov - Category: Research Source Type: clinical trials
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Source: ClinicalTrials.gov - Category: Research Source Type: clinical trials
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