Being well enough to go home is a big step, and the transition from round-the-clock hospital care to home requires education and close monitoring.

Published: August 11, 2020 | Updated: November 23, 2021

Caring for children born with complex heart conditions can be challenging and stressful for families.

Treatment involves long hospital stays and sometimes multiple open heart surgeries. Being well enough to go home is a big step, and the transition from round-the-clock hospital care to home requires education and close monitoring.

These complex conditions such as hypoplastic left heart syndrome are known as single ventricle anomalies.

Extensive education helps make sure family members are both knowledgeable and confident in their ability to handle the transition home.

“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, affiliated with the UofL School of Medicine.

Once the child goes home, the family has a hotline directly to the team for support anytime, day or night.

“They can always reach this team,” Dr. Alsoufi said.

Norton Children’s Heart Institute also provides home nursing, if needed, and the single ventricle team schedules frequent calls to the families to check in and 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.

“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 anomaly poses a complex surgical and medical challenge, and Norton Children’s Heart Institute tailors the initial surgery for each child based on the child’s specific needs.

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 will optimize the baby’s condition. In addition to the extensive family education, frequent follow-up appointments, including repeated imaging and future cardiac catheterization dates, are scheduled.

Any additional follow-ups with specialists such as in genetics, gastrointestinal conditions, endocrinology, hematology and neurology are arranged and scheduled as well prior to discharge.