What happens the next few months? And then?

What happend next depends for a large part on your baby as an individual.

If your baby is diagnosed with CAH, your healthcare team will help and support you as you learn about timings and dosages of medication.

Once you and your baby are at home, further questions about how best to support your baby, how to talk with your child about his/her condition, how and when your child may be involved in care decision in the future, etc. … will arise.

It can be helpful to have a detailed review meeting after a year or so with some members of your medical team to go over events after the birth, to talk about the diagnosis and what it means, and to prepare a long-term care plan.

Just like all kids, children with a DSD need love and support from their parents. Some children will need longer term support from a healthcare team that places the wellbeing of your child at the heart of all they do.

If your baby is diagnosed with Congenital Adrenal Hyperplasia, you will find lots of information on the website of the family group ‘Living with CAH’ -via the website you can also join an on-line Forum for families.