Care after diagnosis
Sadly bilateral renal agenesis is a fatal condition for which, at present, there are no treatment options or cure.
You may also hear the term 'Incompatible with life' to describe bilateral renal agenesis.
Parents are 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.
Should the parents wish to continue with the pregnancy, a palliative care team are usually involved to help keep the baby comfortable if they are born alive. Pulmonary hypoplasia is usually the cause of death in babies with bilateral renal agenesis due to their lungs being underdeveloped.
There is a procedure called Amniofusion where a saline solution is injected directly into the uterus to replace the lost amniotic fluid.
The theory is that the baby will swallow the fluid, thus creating a positive pressure enabling development if the lungs.
We are aware that there is currently an ongoing trial at Johns Hopkin Hospital in Baltimore, Maryland, USA researching the use of amniofusions in babies diagnosed with bilateral renal agenesis.
Unfortunately at present we are not aware of any such trials taking place in the UK but we are hopeful that through funding from
'The Jacob Wilkinson Foundation' there may be some research into bilateral renal agenesis or the use of amniofusions at some point in the future.