How to Help Infants with Congenital Heart Disease Avoid ‘Limping’ to Transplantation

Published June 2020 | The Journal of Thoracic and Cardiovascular Surgery

While families of children with heart failure often expect a heart transplant to provide decades of survival, the actual likelihood of post-transplant survival for some patients—especially infants with congenital heart disease (CHD)—can decline sharply based on surprisingly common risk factors, according to heart experts at Cincinnati Children’s.

“We were surprised to find that a patient with CHD awaiting transplant while being mechanically ventilated as their only modifiable risk factor had a one-year survival of only 75% after receiving a transplant, because such a patient would not commonly be considered a high-risk candidate,” the co-authors state. “Even more concerning was that if that patient had renal dysfunction, one-year survival approached 60%, and it was even less than 60% if the patient was also an infant.”

A team led by Kyle Riggs, MD, and David L. S. Morales, MD, reviewed survival data for more than 4,100 pediatric heart transplants performed between 2000 and 2017. They compared cases according to “modifiable risk factors” (MRFs), such as ventilator dependency, kidney dysfunction, or liver dysfunction.

Without any MRFs, one-year survival can be over 90%, and reaches 95% in many cases. However, 36% of patients had at least one MRF. Survival for an infant with CHD and two MRFs dropped to 58%. These risk factors are common; occurring in up to four in 10 patients listed as status 1A.

Morales and colleagues suggest that these findings will enable families to be provided with realistic expectations regarding post-transplant survival. The findings also encourage providers to use ventricular assist devices (VADs) more often to allow children with MRFs to enjoy the same post-transplant survival outlook as others without them.

“Children should not limp to transplant but approach it in their best possible state to maximize each organ and their outcomes,” Morales says.

Charts showing how much heart transplant survival can be affected by relatively common risk factors.

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An image of Kyle Riggs.

Kyle Riggs, MD

A photo of David Morales, MD.

David L. S. Morales, MD

Citation

Riggs KW, Zafar F, Lorts A, Chin C, Bryant R, 3rd, Tweddell JS, Morales DLS. The reality of limping to pediatric heart transplantation. J Thorac Cardiovasc Surg. 2020 Jun;159(6):2418-2425 e2411.