• teenagers
• disability
• family planning service provision

My daughter was only 8 years old when she first showed signs of puberty. To start with we were in denial as we were certainly not ready for this stage in her life at her age. We simply put her pubic hair growth down to her medication.

She has a mitochondrial cytopathy which has affected her whole body, leaving her with many physical and mental complications. She is totally reliant on others for her care, she is unable to walk, talk, eat or communicate in any way and she has very little understanding of her surroundings.

At the age of 8 years, puberty had not even been considered. First, we thought that she was far too young, and second, how could we possibly cope with everything that comes with puberty? This was a major worry for us. How would we manage her periods, how would carers and school staff deal with her?

My first instinct was to find ways of stopping this from happening. We took her to an endocrinology consultant at a London children’s hospital where she had various tests and a hand x-ray to confirm that she had actually started puberty and to see what stage she was at. We were told at this consultation that children with complex needs often developed much earlier than ‘normal’ children. But we were also told that pubic hair growth is not necessarily the start of puberty. This was a complete surprise to us and, on reflection, knowing this sooner would have reduced our anxiety.

I had many questions including ’How will she understand what’s happening, will she stop growing?’, and so on. So her paediatrician arranged for me to meet a local contraception and sexual health consultant. It was so refreshing to be able to have a frank conversation and an opportunity to ask some basic questions about puberty, but I also appreciated that we had time to discuss possible management options for my daughter. She gave me the reassurance that a lot of help and advice, and also management choices, will be available to us when the time comes. We now know that premature development is OK and that our daughter is not on her own!