Dave and Christine's Story

[Received Aug 2003]

Joanne was born in 1972; she was a beautiful little girl. Whilst in the maternity hospital I was moved to a side ward and told to put my washing for the baby in a bag marked contaminated linen. I had not idea what the reason was despite asking over and over again. I was sent home early and had an appointment with a very nasty doctor who didn't tell me anything about Jo but kept asking me if I was going to have any more children.

A few weeks later we saw another doctor who was much nicer, but on reflection didn't know too much. He told us Jo had a condition called AIS, which meant she was born with testes instead of ovaries. He told us that in time there would be ovary transplants and that they would be able to bring on her periods. Joanne saw this doctor until she was about 12 and then saw another Doctor who was also very nice.

Jo had her testes removed when she was fifteen. We were advised to tell her that she was having a hernia operation because she had been born with a hernia, which is how they detected her condition. My husband and I will never forget Joanne's face when the doctors told her the hernia had strangulated her ovaries and that she would not be able to have children. This was the advice we were given by the medical profession.

A few years later we were told to tell Jo the truth about her condition. It wasn't easy. We had been told to lie to her for so many years and now they were advising us differently. It was a hard time, Jo was in university and we wanted her to graduate and have a good career. However, being so intelligent Jo had already realized that the things she had been told didn't add up. For years she had been very depressed and confused by the things the doctors had told her. Jo tried to find out more about her condition and was eventually told the truth by her GP in Brighton. She could not forgive us for all the years of deceit and for a long time afterwards our relationship with was very strained.

Things are much better now. Jo is getting her life together and has met a lovely man who knows all about her condition and is supporting her through it. Looking back over the years, the deceit was dreadful and the dealings we had with some of the medical profession was disgraceful.

I still remember a time when Jo was in hospital as a baby and the nurse said to us "isn't it ironic that she's in a blue baby-gro". And when Jo was a teenager she had laryngitis and the GP said to us "perhaps her voice is breaking". These comments were made from people in the medical profession, people whose advice and judgment you're supposed to trust.

We just hope that there is no more deceit for AIS children being born today and that the medical profession has become more educated and sympathetic towards the condition.