Kirsten's Story

Kirsten's Story (Neitherlands)
* 29-5-1986 † 6-9-2000 *

This is the terrible story of my dear niece Kirsten. We loved her as if she was our own daughter. Kirsten was an inspired, happy and sportsmanlike girl of 14 years old when she died suddenly and unexpectedly. We want to tell the story of Kirsten and want to spread it to the world. We want physicians and parents to be alarmed when young people pass out or complain of dizziness.

The story of my sister and her daughter Kirsten begins 9 years ago when Kirsten was 8 years old. Kirsten began passing out for no apparent reason. These attacks were frequent but unpredictable. Medical tests were ordered but nothing seemed amiss. During a medical test Kirsten had one of her attacks. The nurse who saw the attack thought it might be epilepsy. Never was there any proof found that her attacks were related to epilepsy but the doctors decided that it was best that she be treated with medication for epilepsy.

So she had her good times with almost no attacks and her bad times with dizziness and passing out. Medications were changed a few times but the attacks were never 100% under control. Even an ECG provided no answers. The doctors gave reasons such as stress or hyperventilation for Kirsten’s “problem”. My sister always had her doubts about Kirsten’s diagnosis. She thought back to her own youth and remembered she sometimes had fainted.
On a Saturday, five days before Kirsten died, she had very serious attacks and she was not feeling well. Kirsten continued poorly so she was admitted to the hospital on Tuesday. Wednesday the hospital called my sister to say that Kirsten was not doing so well. We rushed to the hospital and they told us the terrible news that Kirsten had died.

Kirsten was examined by a pathologist. After six months came the results: cause of death: the heart stopped beating. My sister and brother-in-law began searching for another opinion.

During this time my sister was very scared for herself. We couldn’t put up with the idea that nothing was found. My sister and I searched on the Internet and found The Canadian SADS Foundation website. The information and support we received was invaluable.
My sister wanted to be examined by a cardiologist and I supported her because everyone said that the searching for a cause of death for Kirsten was becoming an obsession for us. After testing that included a 48 hour holter monitor test, everything became clear and the whole puzzle fell together. My sister was called by the hospital; she was admitted and told she had Long QT-Syndrome. She was in the hospital for 6 weeks and during that time the doctors decided that she needed an ICD.

It is now almost 2 years and my sister is doing well with her ICD. She hasn’t had an attack up till now and she may drive her car again. The rest of our family has been examined for Long QT-Syndrome. Nobody else in the family has Long QT-Syndrome.

I hope that telling this story will awaken the doctors, parents and the public alike to the fact that passing out or dizziness is not always something innocent. This story is intended to keep the memory of my niece Kirsten alive, so we will never forget her. She was so alive, connecting with other people, so bubbling over with life, so sportsmanlike that she was much, much too young to die! This story is also in memory of all the young people in the world who have died suddenly and too young from some form of cardiac rhythm disorder.

Submitted Spring 2003 by:
Maria Glasbergen,
Waalwijk, The Netherlands