About LQTS

Did you know:

  • Long QT syndrome (LQTS) is the most common cause of death due to heart rhythm problems in infants, children and young adults
  • Before they are born, babies with LQTS  can have the same heart rhythm problems as infants, children and young adults with LQTS
  • Treatment of LQTS  can save lives
  •  LQTS babies  can be safely and effectively treated before they are born
  • LQTS results from a mutation in one of the genes that control how the heart relaxes.
  • As many as 8-10% of babies who die before birth without any other problem have LQTS mutations
  • About 10% of babies who die from Sudden Infant Death Syndrome (SIDS) have LQTS mutations
  • Most LQTS is inherited from baby’s mother or father
  • If a parent has LQTS, each of their children have a 50% chance of having the same LQTS mutation
  • Yet people with LQTS in the same family can have very different symptoms
  • The symptoms of LQTS in the baby BEFORE birth are a heart rate slower than ‘normal’
  • Most of the time this ‘slower than normal heart rate’ of LQTS babies  is not recognized to be abnormal
  • Thus:
    • The majority of LQTS babies have  a slower than normal heart rate before they are born
    • The majority of LQTS babies are not suspected to be abnormal,
  • So:
    • LQTS babies are not referred for additional testing to confirm LQTS
    • LQTS babies lose the opportunity to receive life- saving treatment.


For more information about pregnancies affected by Long QT Syndrome, please visit the website link below: