It is the most complex cardiothoracic surgery performed in newborns, one in which surgeons literally construct a new, larger aorta for babies born with hypoplastic left heart syndrome (HLHS). Called the Norwood procedure, it must be done within the infant’s first week of life, followed by a second surgery when the baby is three to six months, and a third at age four or five.
In the past five years, surgeons at Children’s of Alabama have completed 54 Norwoods. Just three babies died, for a mortality rate of 5.5 percent. That compares to a national average of about 15 percent, based on statistics from the Society of Thoracic Surgeons Congenital Heart Surgery Database, which tracks all congenital heart surgeries in the country. In addition, the one-year survival rate at Children’s is about 90 percent compared to the landmark Single Ventricle Reconstruction trial, which had a one-year mortality rate of about 70 percent.
We are obviously proud of this. It is a combination of better resources and the evolution of a well-developed team. The cardiothoracic program took off in 2012, when the Benjamin Russell Hospital for Children opened and the program moved over from the University of Alabama at Birmingham. Before that, there were just seven pediatric cardiac intensive care beds; two dedicated pediatric cardiac intensivists; and nurses who took care of both adult and pediatric patients. Just one surgeon performed Norwood procedures.
Today, the Bruno Pediatric Heart Center at Children’s, which occupies most of the fourth floor of the hospital, boasts a 20-bed cardiovascular intensive care unit with three surgeons performing Norwood procedures, seven dedicated intensivists and a large pool of nurses who only take care of children.
We are much better in all phases of care, including preoperative diagnosis. In the past, only about half of infants born with the condition were diagnosed in utero. Today, that figure is closer 80 percent. It’s a testament to the hard work of the obstetricians and pediatric cardiologists who are making the diagnosis. The earlier notice enables surgeons to better plan for the surgery, ensures the mother delivers at UAB where the newborn can receive immediate care and helps the family begin to process and understand a life-changing diagnosis.
The team continually looks for opportunities to improve outcomes and isn’t afraid of change. For instance, they are now more aggressive about avoiding ventilation and try to get the babies to eat by mouth. They also encourage patient bonding with parents during the first few days after birth, which we think is very important for later development.
In addition, everything, from pre-operative to operative to post-operative care has become more standardized, leaving less room for error. While there are numerous techniques for the Norwood procedure, we’ve tried to standardize our approach better so that all our babies get a very similar operation.
Another contributing factor to the outstanding one-year survival is a home-based interstage monitoring program Children’s instituted. The hospital was an early national adopter of this program, in which parents use an iPad and special app to closely monitor their baby’s condition and keep nurses notified of any changes. The use of technology allows for much closer follow-up from a distance while still maintaining the same high levels of in-person care in the pediatric cardiology clinic.
But all the statistics in the world can’t make up for the most important improvement the Children’s program has seen, which is improved long-term survival with a good quality of life – the ultimate goal with congenital heart disease. Success in congenital heart surgery can’t be measured in postoperative or one-year outcomes. We strive to allow these babies to grow up and live the best lives that they can.
Robert Dabal, M.D., is the chief of pediatric cardiothoracic surgery at Children’s of Alabama.
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