Rebecca Righeimer

Lene’s journey began on December 27, 2003.  Her family, consisting of herself, her husband Jim, and their daughters Rebecca (4) and Morgan (2) had been celebrating Christmas with their extended family members.  The little girls were very excited!  After coming home from the party, Lene bathed the girls in the bathtub and tried to clothe them and brush their hair as they continued to play with each other.  The next thing she knew, Lene turned around to find her daughter Rebecca on the floor making little growling sounds with her eyes half open.  After a moment, Lene Realized there was something seriously wrong with Rebecca.  Lene ran to Jim with Rebecca in her arms.  Handing their daughter over to Jim, Lene called 911.  After 50 minutes of resuscitative procedures, Rebecca’s heart was shocked back into rhythm—but her brain had been without oxygen for too long.  What was worse, there was no explanation for Rebecca’s condition.

It was shortly thereafter that the Righeimers had their first encounter with a cardiologist who mentioned the term “Long QT”, but failed to explain the condition further.  Lene left the meeting thinking that her child had died of a heart attack.  After that Lene and Jim made the painful decision to take Rebecca off life support.  “Such a healthy little girl could not have died of a heart attack,” Lene recalls, so she decided to investigate “Long QT” online.  Lene found the SADS website and contacted Dr. Vincent, who urged her to have Rebecca’s blood screened (this had to be done via birth blood screening card because Rebecca’s body had already been embalmed).  The blood tested positive for Long QT.  After years of research and waiting, the Righeimers finally got answers.  Lene’s whole family was tested and found that Lene and her next child, Eleanor, were also positive for LQTS.  They now take beta-blockers and are doing well.  Being proactive about SADS education has led Lene to find meaning in the sorrow. “If I can let other people know about Long QT,” Lene says, “then Rebecca will not have died in vain.”