Other healthcare professionals who you may have contact with include:
The general paediatrician or neonatologist
These are the children’s doctors in your local hospital or maternity unit who are involved in the assessment of your child soon after they are born and who will refer you to the appropriate specialists in differences of sex development.
Radiologist
A radiologist is a doctor who is experienced in performing scans to look inside the body, such as ultrasound scans or magnetic resonance imaging (MRI). They will be able to describe their findings and report back to the MDT. Sometimes scans are undertaken by a radiographer (a member of the Radiology team).
Clinical geneticist
Some forms of differences of sex development are due to an imbalance in chromosomes or to a variation in your child’s genetic code (DNA/genes). Often these conditions just happen by chance, but sometimes they can be passed to the child (inherited) from the mother, the father or both parents. This is a complicated area to understand initially and varies a lot depending on the specific condition. A clinical geneticist can help to explain the likelihood of a genetic condition being at the root of your child’s differences of sex development and can counsel or guide you about what genetic tests might be useful. Genetic testing might provide information as to whether other members of your families may possibly be affected or “carry” a condition and whether further children you have may possibly have a similar difference of sex development.
A clinical geneticist usually gets involved after diagnosis. Differences of sex development will only be a small part of the work of clinical geneticists but they are experts in genes and chromosomes.
Other members of the MDT
Other members of the MDT who you are unlikely to meet personally are a clinical biochemist (who helps measure hormones and interpret the results of tests) and a histopathologist (who looks at samples down the microscope, which is rarely needed, to see if a structure is an ovary or a testis, and how well formed it is). Occasionally, the expertise of a medical ethicist will be obtained to help the team work through complex or challenging situations, or a religious leader may be consulted if the family have strong religious or cultural views and need appropriate guidance.
Sometimes your general practitioner (GP/primary care doctor) can be overlooked in the whole process as they are unlikely to have much experience of children with differences of sex development. However, your GP can be a great source of support for you and your family. They may be involved in prescribing certain medicines if require or for giving injections as part of a hormone stimulation test.
Although the number of professionals involved in your child’s care may seem overwhelming, you are unlikely to meet them all at the same time. Most centres have regular MDT meetings that will take place without you and your child. Information will be discussed with you afterwards by a smaller group of key people.
Don’t forget: Your views and feelings are critical. The parents and child should consider themselves as an important part of the team!
Role of family, friends and peer support
Having support outside of the hospital can be very important for the wellbeing of the family.
Whilst some families discuss their child’s condition with family and friends, and draw a lot of support from it, others rarely discuss it beyond their closest family. Families who can discuss the condition more widely and receive social support may feel more relaxed about the condition and long-term wellbeing of their child. Peer support is when you connect with other people who have experienced or are experiencing similar circumstances. This support can be very helpful in getting another view on what a diagnosis means, and in learning about and exchanging practical information about raising children with differences of sex development.
Your doctors might be able to put you in touch with local families, or you might be able to link into peer events put on by your team or by dsdfamilies or other peer support groups.
