My role in Vietnam was to present a talk to doctors, specialists and nurses about how a team of people helps to provide the best care for CAH patients, as well as a presentation to the families of the Vietnam CAH club. Our team consisted of Prof. Garry Warne, a paediatric endocrinologist and the director of Royal Children’s Hospital International; Dr Sonia Grover, a gynaecologist and obstetrician who has worked with many CAH women; Elizabeth Loughlin, a social worker who frequently sees CAH girls and their families, and also me. Each member of the team would discuss their own role and how we all work together and often refer to each other to help the patients and families live well with CAH.

My talks were translated into Vietnamese, but it was hard for me to gauge the impact of my talk to the doctors and professionals. I talked about our family story of diagnosis, my role in the support group, in general what families are concerned about, and also the benefit of having experts to refer to. As one of the only a few non-medical/professionals in the room I was sometimes overwhelmed with the technical descriptions of CAH. I felt most uncomfortable when the doctors showed photographs of children and their genitals in relation to CAH sexual development. Some of these patients were named on the screen. I worried for the patient and their family. How would they feel if they were sitting in this room? The issue of the patient’s feelings did not arise during the medical staff presentations. It seems to be a cultural issue that feelings aren’t often discussed with the patients. I cannot ever consider not being able to talk to our doctor about how I feel.

I guess a small breakthrough for me was during a coffee break. A doctor told me how he spoke to a family whose child had been diagnosed with a chronic condition. The family was very worried for the child and so the father stayed home from work, as did the uncle and aunty etc. In the home, they did not make any noise around the ‘sick’ child. I thought to myself that happens in Australia too. When we were told about CAH, I worried about our child dying every single day. After I contacted the support group, I understood it was OK and normal to feel like that. In the long term, it’s not good for the child or family. Talking through my feelings with a support group member helped me get over that. So things were not so different in Vietnam after all. In Australia, we have more opportunity to talk about things that worry us or resources to contact a social worker. But, these Vietnamese families don’t have resources to ask those questions. I wondered where they hid all those emotions.

It’s not often that I’ve experienced something that’s changed my life. This day was one of those events. I met with Giang the past CAH club president the day before at the doctors’ conference. She’s a wonderful young woman in her 20’s who is passionate about improving life for CAH patients in her country. I believe that I will always have a connection with her. When she met my daughter with CAH there was an instant bond between them. She also welcomed my husband and son like we were old friends.

There were somewhere between 150 – 200 people in the auditorium when the meeting began. I started out with my story again about the diagnosis of CAH in our daughter and how we felt at the time. The parents seemed to listen, but I was not quite sure if anything in my speech was helpful to them. Then the new club president stood up and told his story of his son’s diagnosis. He spoke about when his son asked why the other children in the family didn’t take medication for CAH and how it broke his heart as a father to answer that question. I addressed the club members and asked them to tell me their stories as well. I was not prepared for what followed. A few parents stood up and asked questions as well as telling their stories. One lady stood next to me and spoke of her concerns for her daughter. She’d had one operation and was worried that she’d need another. She broke down in tears and I found myself in tears as well. She had so much grief inside her. Many comments seemed to focus around the culture – it’s very important to be married and have children in the Vietnamese people’s eyes. They worried for their children’s ability to be accepted by a partner and be able to conceive-- not unlike many Australian parents who’ve felt the same.