LIGHTNING FLOWERSJanuary 5, 2021
Lightning Flowers: My Journey to Uncover the Cost of Saving a Life
By Katherine E. Standefer
Little Brown Spark
‘Lightning Flowers: My Journey to Uncover the Cost of Saving a Life’ is a memoir by Katherine E Standefer, narrating the story of her own experiences with an implantable cardioverter defibrillator (ICD), an electronic device used for pacing the heart through real time correction of life-threatening cardiac arrhythmias. Kati, as her friends and family call her, was born with a rare genetic mutation that caused congenital long QT syndrome (LQTS) of the heart. For those with the syndrome, the heart takes longer to reset for its next beat. This can cause an increased risk of an irregular heartbeat, which can result in fainting, seizures, or sudden death.
As per medical literature, low levels of potassium in the blood, low calcium or heart failure can cause the onset of LQTS, but in the case of those with a genetic predisposition, long QT can be triggered by exercise or stress. The first documented case of long QT was reported from Leipzig in 1856, when a deaf girl died when her teacher yelled at her. This was several decades before the ECG was invented, as ECG is the diagnostic tool used to identify the disorder. The Leipzig case may also be the first reported case of Jervell and Lange-Nielsen Syndrome, which is caused by a genetic condition characterised by severe prolongation of the QT interval.
Katherine’s case is much more recent.
In November 2012, while Katherine was playing a soccer game, she felt three invisible bolts of electricity, which, in her words, felt like “a maul cracked open my chest with a sickening thump and a hot
whip tearing through my back”. The shock came from the ICD. But it was only the beginning of her struggles with the device that she had got implanted just three years earlier. Soon after, her health became increasingly unmanageable as the device began to malfunction due to a crunched internal wire.
‘Lightning Flowers’ narrates the real story of a person getting sick, receiving treatment, becoming sick again, and finally triumphing over all her adversities through perseverance and will power. In Katherine’s case, the problems were more from the implanted device and less from the disease itself.
The memoir remains as the first documentation of an LQTS patient’s experience with an ICD and functions as study material for heart specialists.