Clinical care of DSD

Most children with a DSD will develop into happy and healthy individuals. They may nevertheless require support from health professionals other than medical doctors. This type of care is offered by some, but unfortunately not all, DSD teams. Holistic management in DSD implies that, besides medical treatment, a team can offer the families ample emotional and psychological support. 

Some patients (with CAH) may experience a life-threatening condition referred to as ‘salt wasting’. Whilst other children with a DSD do not face a medical emergency, you may well find the experience your child is going through to be very threatening and confusing.

The precise diagnosis of a child may necessitate decisions to be made relating to  which of different interventions or treatments should be used, or whether they should be used at all. Each parent or guardian  should be informed about  timeframes for when these medical interventions might be offered or applied. You can ask your doctors for this information if they do not provide it or if you are unsure.

Removal of the testes may be necessary  if hormone production needs to be stopped or if there is an increased chance for illness (malignancy)  if they are not removed. Surgery to the genital area, particularly in young children, should be considered very carefully as it may lead to problems such as the development of scar tissue, which may limit your growing child’s longer term treatment options.  In addition, it is important that children can make their own decisions about their bodies. Young adults who wish to enjoy intercourse may need surgery to make this possible.

If ovaries or testes have not been developed, do not produce enough hormones or have been removed, hormone treatment is necessary to start puberty and keep the bodies of the children healthy as they grow older.

Irreversible medical procedures such as surgery or hormone treatment should be postponed to allow the child to give consent to any medical intervention as they mature.

Allowing a child to understand and agree to their own clinical  care  gives them control over their lives and may better equip them to overcome challenges in their lives and develop healthy self-esteem. Psychologists know the impact of such challenges, no matter whether it concerns the parents or the child. “How will my child be treated in school? Who can I rely on? Will my child be able to enjoy sexuality? Will my child have a family?” These are just a few ideas one may struggle with. A multidisciplinary team should help you and your child to find your way through these questions. Ask for their help if it is not offered to you. If this help is not available in the hospital, your doctors might know professionals outside the hospital who may be able to help you.

For specific aspects of treatment: see websites of the various conditions click here.