The overall rate of congenital heart disease prenatal diagnosis for children being treated at Norton Children’s Hospital almost tripled from 2011 to 2018, from 13.8% to 39.7%, after we opened the four sites included in the study.
We know babies with a congenital heart condition have a much better chance of survival if they are born near a pediatric surgical center. The challenge has been detecting these conditions before birth.
Prenatal diagnosis of congenital heart disease (CHD) has been a problem over the years, with detection in our region in the early 2000s estimated at only 20% to 30%.
In 2011, we started a program aimed at diagnosing more congenital heart conditions before birth. We trained sonographers at small regional hospitals in Kentucky to do fetal echocardiograms ordered by patients’ obstetricians or maternal-fetal medicine providers. This approach allowed us to offer high levels of access and flexibility for families, who were able to schedule same-day or next-day echocardiograms at their local hospital.
The goal was to improve access to fetal echocardiograms, which include specialized images and measurements performed by specially trained sonographers. Studies suggest lack of access has been a major factor in the low rate of prenatal diagnosis of congenital heart disease.
We began in Ashland, Kentucky, added Paducah and Lexington in 2014, Owensboro in 2016 and Bowling Green in 2021.
Prenatal diagnosis of CHD allows families to prepare for the challenges ahead. We try to get families as much information as quickly as we can, beginning with a video visit soon after the diagnosis.
We follow that with an in-person visit that we call ‘meet the teams.’ The family will come to Louisville to meet the pediatric cardiac surgeons, pediatric cardiologists, neonatal intensive care team, cardiac intensive care team and support team. They’ll also receive a binder packed with information they will need in the weeks and months ahead.
When the diagnosis is made prenatally, the family is mentally prepared, and the baby begins receiving treatment immediately after birth.
This is a much better experience for the family than situations where babies are not diagnosed before birth. In those cases, tests after birth reveal the congenital condition, and the baby is transported to a regional center and stabilized for surgery. This is incredibly stressful on the family.
Rates of CHD prenatal diagnosis nearly triple with outreach
In our fetal tele-echo program, the specially trained sonographers at each outreach location follow the protocol used by Norton Children’s Heart Institute, affiliated with the UofL School of Medicine. The images are sent via virtual private network to Norton Children’s Hospital, where they are reviewed and interpreted within 24 hours.
Refer a patient
To refer a patient to Norton Children’s Heart Institute, visit Norton EpicLink and open an order for Pediatric Cardiology.
The program was part of a study I co-authored, “Use of Fetal Tele-echo at Small Regional Hospitals Increases the Rate of Prenatal Diagnosis of Congenital Heart Disease,” which was published in June in Prenatal Diagnosis. The overall prenatal diagnosis rate for children being treated at Norton Children’s Hospital almost tripled from 2011 to 2018, from 13.8% to 39.7%, after we opened the four sites included in the study. An additional site in Bowling Green has been added since the study was completed.
The results were across the board, with each of the sites showing dramatic improvements in prenatal diagnosis. The benefits also cut across racial and socioeconomic lines. In fact, patients from ZIP codes with the lowest income level saw the biggest increase.
Even more encouraging, this program is sustainable. One reason for the success of this program was that it builds on our 30-year history of strong relationships with the regional hospitals. We trained sonographers who live in the local community and work for the local hospital. As a result, when one of our sonographers retires, another sonographer at that site is able to continue the service.
Even as this marks a strong step in the right direction, overall prenatal detection for babies throughout our region is still below 50%, meaning there is plenty of room for improvement. When patients are referred for fetal echocardiograms, congenital heart conditions are picked up 95% of the time. The challenge going forward will be to have more at-risk babies referred for fetal echocardiograms.
I’d love to figure out if there’s a way to team up with local OB/GYNs to improve the screening process. In the meantime, we’re very proud of how successful fetal tele-echo has been in identifying babies who will need immediate, specialized care.
Brian J. Holland, M.D., is chief of pediatric cardiology with Norton Children’s Heart Institute.
