Interstage support for single ventricle anomaly families improves outcomes

By providing family support and close monitoring, we’ve been able to reduce the mortality rate after discharge with a Norwood procedure and before readmittance for a Glenn shunt by more than half from what is typical for congenital heart centers.

Caring for children born with single ventricle anomalies can be challenging and stressful for families.

Before these children go home for the first time, Norton Children’s Heart Institute, affiliated with the UofL School of Medicine, gives family members extensive education to make sure they are both knowledgeable and comfortable.

Once the family takes the child home, Norton Children’s Heart Institute has specialists on call around the clock and monitors the child’s health closely.

By providing family support and close monitoring, Norton Children’s Heart Institute has reduced the mortality rate after discharge with a Norwood procedure and before readmittance for a Glenn shunt by more than half. The time between these complex procedures typically has a mortality rate of 10% to 15%.

“We have a specialized single ventricle team that is specifically taking care of those patients on a 24/7 basis in our hospital,” said Bahaaldin Alsoufi, M.D., chief of pediatric cardiothoracic surgery and co-director of Norton Children’s Heart Institute.

Norton Children’s Heart Institute also provides home nursing, if needed, and the single ventricle team schedules frequent calls to the families to make sure everything is OK, according to Dr. Alsoufi.

In addition, families will start to receive an iPad where they’ll enter data so the team at Norton Children’s Heart Institute can continuously monitor what’s going on at home and look at any changes remotely.

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“We definitely have a very strong home monitoring surveillance system for our patients, following discharge,” Dr. Alsoufi said. “We monitor growth, feeding, vitals, temperature and other important parameters, with the aim to identify the red flags.”

Norton Children’s Heart Institute will bring these children in right away to assess whether there are any questions or concerns detected with this home monitoring protocol and will admit them to Norton Children’s Hospital, if necessary, to treat issues early, according to Dr. Alsoufi.

Single ventricle anomalies account for more than 10% of congenital heart defects. Each defect poses a complex surgical and medical challenge, and the Norton Children’s Heart Institute tailors the initial surgery for each child based on anatomic and physiologic findings.

With hypoplastic left heart syndrome, the most common single ventricle anomaly, the left ventricle, mitral and aortic valves, and ascending aorta are very small.

Typically, these children require three surgeries, a Norwood procedure, performed during the first week of life, followed by a Glenn shunt at 4 or 5 months and finally a Fontan procedure at around 3 years of age.

After the Norwood procedure and before discharge from the hospital, doctors at Norton Children’s Hospital prepare the baby and family for a successful transition home. In addition to the extensive family education, frequent follow-up appointments, including repeated imaging and future cardiac catheterization dates, are scheduled.

Especially with these high-risk conditions and procedures, the interstage period after the Norwood hospitalization and before the Glenn shunt procedure is a dangerous time. Interstage monitoring and support at Norton Children’s Heart Institute has reduced the mortality rate during this time to less than 5%.

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