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Benjamin Anderson
SADS Foundation:Sudden Arrhythmia Death Syndromes Foundation
Fund in Memory of
Benjamin Anderson
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Our 11 year old son Benjamin was born with the heart defect Transposition of the great arteries, and had open heart surgery at 5 days old. We were told that he could never play contact sports but could lead a normal life otherwise. He had been followed closely by cardiologists. Benjamin had been doing great. He started 6th grade and was loving school. We had signed our 4 children up for swim lesson like we often in the fall. This is when Benjamin experienced sudden death syndrome.
On October 27 at swim lessons our son Benjamin was in the middle of a lap in the pool when he slid silently under the water and did not come back up. We yelled at the life guard to get him and the teen age swim instructor jumped in and grabbed Benjamin. CPR was immediately performed and the defibrillator was used with in one minute of his heart stopping. He was worked on by the side of the pool until the paramedics arrived. The paramedics continued to work on him. Then he was taken by ambulance to Carson Tahoe Hospital to catch a life flight to Renown Hospital in Reno. At first we thought Benjamin had drown, but then learned he had no water in his lungs and it had been his heart.
They were trying to stabilized Benjamin most of the night. Early in the morning Benjamin's cardiologist informed us that Benjamin would need to have surgery for pacemaker and defibrillator(ICD). This needed to be done by a specialist that Nevada does not have. He was life flighted to Primary Children's Hospital in Salt Lake City Utah. One week after arriving a Primary Children's Hospital Benjamin had his pacemaker and defibrillator surgery. Three hours after surgery His defibrillator went off six times. Benjamin was having Bidirectional Tachycardia, and the Doctors were not sure why. Gene tests were ordered to determine if it could be a sudden death syndrome. A week later Benjamin was released from the hospital. Two weeks later we had to take Benjamin back to Primary Children's Hospital for emergency surgery on his Trachea. He has been slowly gaining his strength back and trying to get back into the swing of things.
We just recently got Benjamin's test results back. He has CPVT. He continues to take his medications daily which controls his V-tach. His ICD has not gone off since the first night after surgery. The more we found out about CPVT, the more we realized how blessed were we that he went into cardiac arrest at a pool with trained staff that were able to address the problem immediately. We are also thankful for Dr. Saarel from Primary Children's who continues to follow his care. Although we live 500 miles from the hospital Dr. Saarel is able to monitor him through a home monitoring device.
We know that we are blessed to have Ben still with us. He must have angels watching over him.
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Warning Signs
Family history of unexpected, unexplained sudden death under age 40.
Fainting or seizure during exercise, excitement or startle.
Consistent or unusual chest pain &/or shortness of breath during exercise.