Halle Hearts at HOME Program Benefits Families
February 12, 2024
Emmett Shaughnessy had heart surgery before he was even born. While he was in utero, Emmett was diagnosed with a congenital heart defect. Physicians at University Hospitals Rainbow Babies & Children's performed a successful fetal cardiac intervention in utero to fix his pulmonary valve and reverse disease progression.
Once he was cleared to go home, Emmett and his parents, Scott and Annie, were introduced to the Halle Hearts at HOME (High-Risk Outpatient Monitoring and Education) program. Parents of infants born with a rare heart defect are given a home monitoring system with FaceTime and 24/7 access to their pediatric cardiology team through a specially configured iPad.
Halle Hearts at HOME was created thanks to a gift from Wendy and Richard Halle. More than 50 years ago, Wendy’s son, Kevin, had major heart surgery at UH Rainbow when he was just three and a half months old. Wendy said once they got home, she would just sit and look at him, watching for any signs that something was wrong.
“It was incredibly stressful,” she explained. “Now families can go home and be connected to their care teams. It makes a difficult situation so much more manageable.”
Providing Peace of Mind
The iPad allows parents to submit important data about their child’s health, including weight and oxygen level, to the UH Rainbow team in real-time through a specialized app. The app replaces the process of daily written charts and manual calculations and decreases unnecessary visits to the emergency room.
“It was great because our care team said this program would allow us to bring Emmett home from the hospital quicker,” said Scott, “and being able to track how Emmett was progressing after his procedure and making sure he was doing well helped relieve some of those new parent stresses.”
Annie added, “As soon as we were ready to be discharged, we had all the equipment ready to go, picked up the pulse oximeter at the pharmacy, and headed home to live our new normal.”
Looking to the Future
Every day, Scott and Annie weighed Emmett, tracked how much he was eating, took his oxygen level, and added the information to the app.
“It actually graphs the information for you so the doctors and nurses on the back end can see what we are putting in and how Emmett is doing,” said Scott. “And if we had any questions, we could call or email them. It was so easy.”
“It was such a helpful tool,” Annie said. “It saved us from having to make additional long trips to UH Rainbow. It was also nice to have that visual of the graph to reassure us that he was tracking in the right direction.”
Emmett was on the program for a little over a year and a half and today is a typical, rambunctious 2-year-old. While he will need to get a new heart valve in the future, his long-term prognosis is great.
“It’s wonderful to hear about patients like Emmett and the families who are benefitting from this program,” said Wendy. “You never forget your own experience and helping to establish this program is incredibly rewarding.”
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