Learning your newborn has only one ventricle is frightening enough. Knowing that young life will be in your hands alone at home for months while awaiting a second, then a third surgery has to be overwhelming.
However, for parents of infants treated for complex congenital heart disease at Children's Hospital of Alabama, there is good news that can ease some of the stress. This summer the Hearts at Home program of the Pediatric and Congenital Heart Center of Alabama launched their Vivify Health remote monitoring technology to keep a close watch on the condition of babies awaiting surgery, to improve communications, and to support parents in the difficult job of caring for a child with a serious heart disorder.
"When infants are born with a single ventricle, the first and most complex surgery occurs when they are one to two weeks old. To complete the process of rebuilding their heart, they will need a second surgery when they are between four and 12 months, then a third when they are between two and three years old," coordinator Sarah Torsch Blair, CRNP, said. "Those can be long months and years for parents who have to care for their babies at home and monitor their health every day.
"Now, in addition to teaching parents to check their baby's oxygen saturation, blood pressure, weight and pulse daily, we send them home with equipment that also includes a digital tablet issued by the hospital. Even if the family can't afford more mobile phone minutes or don't have a wi-fi connection at home, the Vivify Health system allows them to document and upload their baby's biometric data every day," Blair said. "The technology is set up to flag possible signs of developing problems. If parents have concerns or if we need to talk with them, we can have a face-to-face virtual visit by video conference. If the parents notice a change in the baby's condition, they can speak directly with a nurse practitioner or physician any time day or night."
The Vivify remote monitoring program at Children's Hospital of Alabama was made possible by a $25,000 grant from Mercedes-Benz U.S. International. The grant covered 10 tablets, staff training, and service costs for a year.
"We already have four patients using the remote monitoring, and four more will be using it when they go home," Blair said. "Every day, parents log-in and enter their baby's weight, oxygen saturation, and heart rate. They also answer some simple questions to help us know how their child is doing. Our Hearts at Home team calls them at least once or twice a week see if they have any questions or concerns.
"We've been very pleased with the Vivify Health system. Another advantage is that it can be helpful when the parents don't understand much English or if they aren't very informed about health issues or technology. It makes communicating easier," Blair said.
Keeping physicians updated on their patient's progress is another plus. Patients see their pediatrician and their cardiologist on alternating weeks. In the meantime, their health team can check on how they are doing any time.
"Vivify Health uses cloud technology so the patient's other physicians, their cardiologist, nutritionist, or care team members can use a smart phone or tablet to go online and see the latest data or check longer periods for trends," Blair said. "Even if physicians are out of the office, they are never out of touch."
Although Vivify technology has been used in other areas of health care for adults, this is only the second time it has been used in a pediatric setting.
"Dr. Leslie Rhodes became aware of the technology and realized how beneficial it could be to our patients who are waiting for heart surgery. Thanks to Mercedes-Benz, we were able to launch the remote monitoring and it is now helping our patients and their families," Blair said.
The donation was part of a larger charitable contribution to local causes that fit within the Mercedes-Benz U.S. International's philanthropic mission.
Jason Hoff, president of MBUSI, said the company is pleased to support Children's mission of providing medical care for sick children. "We want to help make this community a more caring, more connected and more prosperous place to live," Hoff said.
Blair said, "By improving monitoring and communication, we hope to reduce unnecessary hospital readmissions or emergency room visits and to save lives. Parents have the assurance that they have immediate communication with their baby's health care team. They are not alone."