Care after diagnosis of Renal Agenesis

Bilateral Renal Agenesis is sadly termed ‘Incompatible with life’. This means at present, there is no treatment option or cure and therefore a fatal condition.

Parents will be given the option of either continuing with their pregnancy where they will be supported and cared for by a fetal medicine team or they may be advised to stop the pregnancy from progressing and be offered a termination for medical reasons (TFMR).

In this situation, neither option is right or wrong, only what is right for each family.

Should the parents wish to continue with the pregnancy, you will receive regular care and support including guidance from a palliative care team. They will ensure to keep the baby comfortable if they are born alive

There is an experimental procedure called Renal Anhydramnios Fetal Therapy (RAFT) or amnioinfusion, where a sterile solution is injected directly into the uterus to replace the lost amniotic fluid. This procedure is to support lung growth and development which may enable the baby to breathe unaided when they are born.

At present, this procedure is not routinely offered in the UK, however, we are aware of a trial currently taking place at Johns Hopkin Hospital in Baltimore, Maryland, USA researching the use of regular RAFT treatments in situations where a baby has been diagnosed with bilateral renal agenesis.