Pregnancy and Long QT Syndrome

Fetal Long QT Syndrome

PI: Bettina Cuneo, MD

This is a multi-center, international observational study.
There are 2 parts to the study, and you can enroll in one or both
In the first part of the study, we look back at the heart rates of your children before they were born. This is called a retrospective study
In the second part of the study, we look forward at the heart rates of your unborn baby while he/she is still in the womb. This is called a prospective study
If you are currently pregnant AND have this is not your first child, you can enroll in both
In both studies, we also ask for results of genetic testing (LQTS positive or negative) of your children

After birth, LQTS syndrome can be suspected by symptoms, an abnormal electrocardiogram and a blood test (genetic testing)
Before birth, it is very difficult to detect LQTS because most of the babies will have a ‘slower than normal’ heart rate, often not thought to be abnormal.
In our study we would like to use the heart rate of babies before they are born to distinguish babies with LQTS from babies who do not have LQTS
And we would like to determine if the heart rates of babies with different types of LQTS are different from each other before they are born
If before the baby is born, he/she he develops bad heart rhythms we can treat the bad rhythms and and plan for the best care of the baby after birth

We are recruiting women and men with LQTS1, LQTS2 or LQTS3 who either have had children in the last 5 years OR pregnancies with an LQTS positive mother or father
If you are LQTS positive and thinking about becoming a mother or a father you can still contact us as this study will go on for about 5 years
If you are not of child bearing age, you can encourage younger (or older) LQTS positive family members to contact us