It's OK to have heart palpitations and get short of breath

Even if a congenital heart defect is corrected by surgery, these people live with a chronic disease. They are healthy even though they are sick, and this can be reflected in different situations - such as when they plan to have children.

1 in 100 babies born around the world has a congenital heart defect. In the West, between 95 and 97% survive thanks to modern surgical techniques and specialist care.

It's OK to have heart palpitations

Annika Bay, a researcher in the Department of Nursing, has previously looked at physical activity in adults with congenital heart disease.

- Virtually everyone can be physically active. In the past, children were discouraged from exerting themselves and from participating in school gymnastics. As adults, they often carry this advice with them, so they may need support to dare to be physically active, that it's OK to have heart palpitations and get short of breath, says Annika.

I really want to try, I have always wanted to try things and see if it would work or not…

But many people with congenital heart disease have limited physical capacity and are not physically active to the extent they need to be. Being physically active is a particularly important factor in their health and well-being, so Annika's research included identifying both barriers to and opportunities for physical activity.

Annika found four factors that can inhibit or stimulate exercise: encouragement, energy level, attitude and environment. For example, if a person received encouragement and support as a child to exercise, they were more likely to exercise as an adult. No or little support and encouragement as a child could mean that they did not really dare to be physically active.

- Adults with heart disease need to know their physical capacity in order to feel confident about exercising. It is important that healthcare professionals, for example, are supportive and knowledgeable.

An unexplored area

In her continuing research, Annika is taking a slightly new direction, towards reproductive and sexual health in both women and men with congenital heart disease, which is still a fairly unexplored area.

- I will be looking at pregnant women and their potential cardiac and pregnancy complications.

The research project is largely based on three major registries, SWEDCON, a registry that includes people with congenital heart disease, the Swedish Pregnancy Registry and the Medical Birth Registry.

The project also includes a survey and qualitative studies. Data on pregnancy, childbirth and the newborn child, as well as medical data on the congenital heart defect, will be collected from the registers. She will use questionnaires to look at sexual function in women and men with congenital heart disease - one example is that poorer circulation can cause poorer sexual function.

The women will be asked to rate their health

From register studies, the researchers are looking at how women themselves rated their health before, during and after pregnancy. The results will be compared with controls who do not have congenital heart disease.

Another question is how the unborn babies are doing - they are often born prematurely, are small and have low birth weight.

In one of the sub-studies, midwives and obstetricians in maternity care will be interviewed, to learn about their experiences and strategies in caring for women with congenital heart disease during pregnancy and childbirth. From registers, additional data regarding the birth itself will be analysed.

Mothers and fathers with congenital heart disease will be interviewed about, for example, fears, expectations and what support they want as parents during pregnancy.

Two PhD students have been accepted in the project and will write their theses based on the data collection.

Always wanted to learn more

Annika Bay has worked as a nurse for 30 years, since 1992 at the cardiologist/heart centre in Umeå and then at the cardiovascular clinic. In 2014, Annika started working as an lecturer at Umeå University to start research. In 2018 she received her PhD.

- I have always been interested in learning more. But I started doing research thanks to a doctor - Bengt Johansson - who inspired me to become a PhD student in his research on congenital heart defects.