Valve defects in three generations

Ann-Tove (© Marit Haugdahl)

Ann-Tove Amundsen has a congenital aortic insufficiency and is a mother to four children. Her own heart defect does not worry her, however she has lost a son to heart disease and her mother also died of a congenital heart defect, at just 39. Ann-Tove lives in idyllic rural surroundings in Nord-Odal, Hedmark, with her husband Roy, sons Trym and Casper and daughter Linnea.

Ann-Tove gave birth to her fourth child, and first girl, in the winter of 2008. Ann-Tove was in good shape, but she experienced palpitations and exhaustion during her pregnancy, so doctors placed her under observation.

“I was accustomed to heart defects growing up. My mum had one, as did our neighbours’ son. He collapsed and died at the age of five. I was six and I remember it very well. I realised that maybe having a heart defect was not so common after all.”


Ann-Tove's mother, Anne-Karin, died at the age of 39, three weeks before her first grandchild, Trym, was born. Anne-Karin’s aortic valve was stenotic, involving the main artery itself, and she died from complications following a second valve replacement.

“Mum was very active and would always prove that she could handle things. We had noticed that she was sick for a long time. Towards the end she couldn't even wash the dishes without taking a break. That was the first time she admitted that she was exhausted,” says Ann-Tove. The first operation did not go entirely according to plan and she required a second procedure, which her body could not withstand. Ann-Tove had to travel 1,500 kilometres to her mother's funeral, just a few days before she was due to give birth to her first child.


Ann-Tove's son, Eskil, died in November 2002, at just six months old. A heart murmur proved to be aortic stenosis. A scheduled balloon catheterisation at the age of three months was called off because the doctors felt that the valve was not as stenotic as they had first feared. “They wanted to wait. We thought that was good news, and happily went away on holiday. Then Eskil became short of breath and stopped urinating. He had total heart failure, and his left ventricle had become enormous,” says Ann-Tove. The little boy underwent surgery at the age of five months. His heart stopped before they could connect him to the heart/lung machine, and again when they disconnected him. As a result, he had to be put on a heart pump after the operation. “It was unbelievable that he survived. Then everything just progressed. After five-and-a-half weeks we came home. We finally dared to relax a little. But after a few days he started throwing up. He became pale and had trouble breathing. Eskil could not be saved. The autopsy revealed that everything was dead inside his heart.”

Decisive assurance

Ann-Tove with her husband Roy, sons Trym and Casper (© Marit Haugdahl)

“When boy number three, Caspar, was born, we compared him with Eskil all the time. The day Caspar reached the age of six months and eight days was very tough. But we felt great the day after. When Eskil died, the people at Ullevål said that I could go there and get followed up if I wanted to get pregnant again. The assurance that I could get good follow-up treatment was a catalyst in my decision to have more children,” says the mother of four.


“While I was growing up, I often asked if I had a valve defect because of my mum. When I was about to get pregnant for the first time I asked the doctors again, and they said ‘no’. And when Trym was born totally healthy, I put my concerns to rest. So when I became pregnant with Eskil, I didn't even think about it. Through my involvement with the Norwegian Association for Children with Heart Disorders (FFHB), I know several people who have two such children. I'm no longer naive enough to think ‘it won't happen to me,’” says Ann-Tove. The possibility of one day becoming a grandmother is a happy one, but not without its risks. Will she have healthy grandchildren? Can children pass the disease on? “That is not a pleasant thought,” says Ann-Tove. I feel that we have had enough. I also have an uncle and a cousin with heart defects.”

Those poor people

Ann-Tove had little interest in her own heart defect when she was growing up. She didn’t even know what it was called, only that it was not dangerous and required no action. “An ultrasound I had last year showed that my condition has not changed after three pregnancies. My heart defect has never troubled me,” she emphasises. Ann-Tove joined ¬FFHB when she found out that Eskil had a heart defect, and is still active in the association.
“When I'm travelling to FFHB meetings, it's like my time with Eskil,” she says.

Author(s): Marit Haugdahl
Last updated: 2009-07-06