This is a strange and difficult case. Now nine years old, Ashley cannot keep her head up or change her sleeping position. She is also tube fed. When a child is as totally dependent as this, increasing weight and size makes all aspects of care-giving more demanding. Ashley's parents have made it clear their desire for surgical and medical treatment was not for their convenience, but for her wellbeing.
Was it right to subject Ashley to such invasive and irreversible surgery? There is no doubt that the surgery, involving the removal of the womb and breasts, together with prolonged hormonal therapy, was distressing and carried significant risks. The parents and the doctors would have to be convinced the benefits outweighed the burdens.
Doctors will usually advise that it is better to wait until the child is mature enough to make their own decision. But in this case it seems Ashley will never be able to decide for herself.
Clearly it is better to allow normal physical development, but the right to go through puberty cannot be absolute. Suppose that, in a particular rare genetic disorder, doctors knew that puberty was associated with a very high risk of untreatable cancer? Under these circumstances it might be in the child's interests to suppress puberty.
Many parents have said to me that the main problem of caring for a disabled child is the lack of social support. Perhaps the main lesson from this case is that disabled children deserve a better deal from the rest of us.
John Wyatt is Professor of Neonatal Paediatrics at University College LondonReuse content