Aims Antenatal diagnosis of bilateral renal disease can result in an infant born with renal or pulmonary failure. We interrogated Northern Congenital Abnormality Survey (NorCAS) database to answer following questions: What decisions did parents make based on this diagnosis? What were the outcomes of liveborn infants? How accurate were the antenatal diagnoses compared to post-natal findings in survivors?
Methods The NorCAS register records all antenatally diagnosed fetal anomalies in a relatively stable population of 3.2 million with an annual birth rate of appropriately 35,000/year. We extracted all cases registered with isolated bilateral renal disease. Additional follow up data was obtained from the regional paediatric nephrology unit.
Results In 20 years, 210 cases of isolated bilateral renal disease were identified antenatally. They were classified by the obstetricians into different diagnoses (table 1). Elective termination of pregnancy was undertaken in 110 (52%) fetuses. Of 91 born alive, 49 (54%) were alive at one year. Termination and survival rates differ between the groups with BRA and bMCKD being universally fatal. Concordance with postnatal findings ranged from 54%-88%.
Conclusion This unique population based study highlights significant discrepancies between antenatal ultrasound diagnoses and postnatal findings in those born alive. In the last 20 years, significant number of fetuses with isolated bilateral renal abnormalities were terminated. Improved diagnostic tools are greatly needed to guide families make these very difficult decisions.