Single ventricle outcomes: fetus to first postnatal procedure
Research type
Research Study
Full title
Single ventricle outcomes from fetal diagnosis to first postnatal procedure. A multicentre experience.
IRAS ID
310923
Contact name
Peter John Lillitos
Contact email
Sponsor organisation
Research and Innovation Centre. Leeds Teaching Hospitals NHS
Duration of Study in the UK
2 years, 0 months, 1 days
Research summary
Lay summary: The normal heart has two pumping chambers (ventricles) to move blood to the body and lungs respectively. Unfortunately, in some babies the heart does not develop normally during life in the womb, with one of the most severe forms of congenital heart disease involving missing one of the heart’s pumping chambers. If one of these chambers is missing or very underdeveloped, this is known as a “single ventricle” heart. The outlook for these babies can vary depending on the type of single ventricle condition, but generally this condition is not curable, and survival may be prolonged by a series of major heart operations to palliate the child. Those that survive these operations generally live to teens or early adult life. We know more about likelihood of survival for those born alive with these conditions, but the data on likelihood of survival from diagnosis in the womb to first procedure as a baby is less well known. For this reason, we aim to evaluate the outcomes of babies diagnosed in pregnancy with a single ventricle heart, up until their first procedure/operation after birth. This information will aid counselling of parents in the pregnancy period, of the likelihood of early-life survival of their unborn baby. In addition, putting this evidence together with the existing published evidence for survival from first procedure onwards, a complete picture of outcomes from fetus to child/young person will be enabled. This information will therefore better inform parental decision making in terms of whether they wish to continue with the pregnancy, and if so what to expect after birth.
REC name
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REC reference
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