Monitoring of children at home between heart surgeries provides early warning

Infants treated at Norton Children’s Heart Institute for a serious and complex heart condition now have advanced home monitoring at a vulnerable time.

When parents take their babies home in between surgeries for a serious and complex heart condition, they also are leaving with a specially equipped iPad to send critical data through a connection to Norton Children’s Heart Institute, affiliated with the UofL School of Medicine.

The device tracks key metrics of the baby’s health and can alert the care team at Norton Children’s Heart Institute even before parents notice any changes.

“The home monitoring is a way to try to detect any issues in kids early and try to intervene early before major complications can happen,” said Bahaaldin Alsoufi, M.D., chief of pediatric cardiothoracic surgery and co-director of Norton Children’s Heart Institute.

Parents use the iPads with special software to monitor children who have hypoplastic left heart syndrome (HLHS), a rare birth defect in which critical underdevelopment of the left side of the heart is combined with other single ventricle heart defects. The iPads are easy to use and don’t require any special training.

Children with single ventricle abnormalities such as HLHS can’t live without surgical intervention. They usually need three procedures to restructure the heart and vessels and redirect the way blood flows. The first — called the Norwood procedure — typically occurs in the first week of life. Children undergo the second procedure, the Glenn procedure, usually at 4 or 5 months.

Between the Norwood and the Glenn procedures, these infants usually are able to go home for a few months, but their health can become unstable rapidly.

In addition to the iPad, families are sent home with a pulse oximeter, a scale and other supplies. Families enter the data into the iPad, delivering measures like oxygen levels, temperature, heart rate, nutritional intake and daily weight immediately to the team at Norton Children’s Heart Institute. This allows providers to react quickly when a child’s condition changes — sometimes even before the parents realize something is wrong, according to Dr. Alsoufi.

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“Previously, we had to rely on the families to contact us if there was an issue,” he said.

Before the iPads, parents would keep track of the information by writing it down and would call in if they thought there was a potential issue.

Knowing Norton Children Heart Institute’s doctors and nurses are keeping a continuous, around-the-clock watch on their children’s health is a source of comfort for parents.

“As they’re leaving the hospital they are excited to take their kids home, but they are also very stressed and scared knowing things can go bad and go bad quickly. They feel much more comfortable knowing the nurses and physicians at the hospital are still with them,” Dr. Alsoufi said.

Information from the iPad makes it easy for the Norton Children’s Heart Institute team to monitor trends in data like a child’s oxygen level and to detect deviations from what’s expected. If a potential issue is spotted, children are assessed in clinic and admitted to the hospital, if necessary, for additional studies or interventions.

Even before the introduction of the special iPads, Norton Children Heart Institute’s dedicated single ventricle team provided careful monitoring of infants during this dangerous “interstage” period and had reduced the mortality rate to below 5%, well below the national average. According to Dr. Alsoufi, the team hopes with the remote monitoring to drive the rate even lower.

Though the continuous remote monitoring program is less than a year old, the iPads have been so successful, according to Dr. Alsoufi, that he expects this type of monitoring to be used for other vulnerable patients.

In the meantime, families of children with HLHS and other single ventricle heart defects enjoy the peace of mind knowing a specialized team at Norton Children’s Heart Institute is keeping a close watch over them.

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