February 13, 2023

Research and collaboration improve advanced heart failure care for children at the Stollery

February is Heart Month

A limited number of programs across North America offer advanced heart failure care for children, and the Stollery Children’s Hospital is one of them.

Heart failure isn’t just an adult condition – worldwide, it affects upwards of two children per 100,000. As an under-recognized condition in children, heart failure is a constellation of symptoms that can result in kids becoming critically ill and requiring support within the intensive care unit. 

Pediatric cardiologist Jennifer Conway is exploring end-stage heart failure treatments through collaborations both locally and internationally to improve health outcomes for children. 

What does your research examine?

One area of my research includes understanding the long-term outcomes of children with cardiomyopathy – a disease of the heart muscle that makes it harder for the heart to pump blood to the rest of the body – that can lead to heart failure.

Additionally, I am interested in different strategies for the management of advanced heart failure including the use of ventricular assist devices and transplantation. A ventricular assist device helps the heart with pumping blood when it is too weak to do the job on its own and is a way to help children waiting for transplantation. A lot of this work has been done in collaboration with a number of international organizations. My latest research is a partnership with Darren Freed, who has focused on optimizing donors’ hearts. 

We feel that this work is very important, as neonatal patients have the highest mortality of all children waiting for transplantation. Currently, there are also limits on the donors we can accept based on how far away they are from the transplant hospital due to damage to the donor’s hearts. We are currently testing a device that will allow donor hearts to be safely transported over a longer distance. This work has been paired with qualitative research to see if the transplant community is ready for this new type of technology and what barriers we would have to overcome.

What is a ventricular assist device? 

A ventricular assist device, or VAD, is a mechanical heart or pump that helps the heart with pumping blood when it is too weak to do the job on its own. It provides the blood to all the organ systems to keep them healthy because with end-stage heart failure, despite medical management, children’s hearts become too weak. We’ve been using VADs at the Stollery since about 2005, and have had the opportunity to improve outcomes in this unique population of children by changing and testing different management strategies. This has been very important for keeping children healthy while waiting for transplant. 

How could the results of your research impact children and the healthcare system?

Studying and understanding the outcomes of children with cardiomyopathy and heart failure is the first step needed to improve their overall health. One example of the impact of both local and collaborative research has made an impact is the switch in the type of blood thinners we use to manage children with a specific type of VAD (Berlin Heart EXCOR). Blood thinners are an important part of the medical regime for patients on VAD as they are at risk of clots in the pumps and stroke. 

After switching the type of blood thinner we used six years ago, we saw a dramatic change in the number of clots developing in the pump. That practice has extended across North America, and several studies have been done in collaboration with other centres in North America that have shown a dramatic decrease in clots in the pump and strokes. Since the 1990s, about 30 per cent of patients on a Berlin Heart would experience a stroke and this has now decreased to 10 per cent, which is pretty remarkable.

Jennifer Conway is an associate professor in the Department of Pediatrics. Her research is funded by the Stollery Children’s Hospital Foundation through the Women and Children’s Health Research Institute.