When parents learn that their child has a developmental difference or a long-term health condition, they can sometimes feel a sense of loss, because their expectations for their child have been altered. Often the parents are keen to do the right thing so that they can get on with the wonderful journey of day to day life. This is the time when treatments are discussed and planned and sometimes started.
Sometimes parents are asked to wait and see how their child develops, to get to know their child's body, understand how it works and what this means for the child in the short, medium and long term to have developed differently. For many, this is at first a very challenging start. Then comes maybe the hardest part; sharing knowledge with the child and learning from them what they can tell you about what they think. Finding the right time for conversations between worried parents and with time-pressed doctors and sometimes with children with a health condition or developmental issue can be very difficult indeed.
Your child's body may do some things differently and could look a bit different from their relatives or siblings, but if you can be comfortable with your child's body they will have the best chance of loving it themselves.
Since dsdfamilies was founded in 2011, we have been in touch with many families with children living with many different 'difference of sex development' diagnoses.
Some families are at the beginning of the journey, others a bit further ahead. Usually families will be in contact with us just from time to time. 'Thank you' they will say and then move on. 'You're very welcome' we reply, 'Come back any time'.
Of those families, some have taken the pathway to raising their children without surgery and others have opted for early surgery. All shared the same frustrations: there is not enough information, there is not enough support to help us understand what surgery can and cannot do or understand the short, medium and long term impact, and there is not enough help to raise a child with genitals that look different. And parents want answers to questions like:
- How do we even explain testes to our girl?
- Can our girls with CAH have periods without surgery?
- Where's the advice for us on raising confident and resilient young men?
- What is the alternative?
- How do we explain this to our children?
- What do we say to people who are looking after our children?
- My son would like to meet other boys his age - can you help?
And so on... These frustrations cannot be patched over or forgotten and questions cannot simply be answered by pieces of information on a website.
They need to be viewed also in the entire context in which our children are born: the support we get at that time, the support we may or may not have from family and friends, the confidence with which our care teams approach our little ones and convey ‘this is OK, we have seen this before and we are going to work with you in raising a confident young person.'
As part of our dsdfamilies programme of work 2019-2020, we plan to work on all those things. In the meantime we are providing access to some practical tools to help families understand and think through what surgery means and also to learn a little more about what the alternatives may be like.
- A short story with some advice about dealing with babysitter and nurseries/childcare providers. It is written for dsdfamilies by a parent and gives you an example of how you can approach these circumstances.
- A girls guide to CAH-by Emma aged 10. A booklet written by a young person living with CAH.She talks about what CAH means and what her mum told her about genitals that look a bit different. Produced by the Living with CAH group.
- A list of topics titled 'What Parents Need to Know' prior to being ready to give informed consent about early surgery.
The last tool lists some really tough questions for parents to ask and process, and equally for doctors to answer. They do offer a very useful starting point for all of us to be clearer and open about the issues and impacts of both surgical and non-surgical pathways, and that is exactly what ALL parents who have contacted us over the years want.