Talking with friends and family....

It can be difficult to know how to explain/what to say to family and friends that your midwife thinks the sex of your baby is unclear. If your loved ones are waiting to hear if you and your baby are OK and whether you have a daughter or a son you could let them know that your baby is having tests because it is sometimes difficult to tell in a new-born.

What you choose to say to those who love you and what you share more widely can be different.

Some parents will say: ‘We can’t tell you yet whether our baby is a boy or a girl, because our baby has been born with a condition that affects what the private parts look like. Doctors are doing further checks and are making sure our baby is healthy and well. We will get in touch soon with more news.’

Other parents will inform family and friends in a general way and not provide any details, for instance, ‘the doctors have some questions about how our baby’s grown. It’s complicated to talk about, and we will be in touch soon.’ You may be concerned that people might ask other questions, but just be really firm: ‘I can’t really explain it myself yet’. You can move the conversation on to something you do need to talk about, such as ‘Thanks for picking up Sophie for us...’ If afterwards anyone whom you don’t want to share information with asks: ‘What was the problem? We were so worried’, you can say: ‘We just needed to make sure everything was ok, all is well.’

…with people who are supporting you and your baby in the hospital and at home

DSDs are a large group of quite rare conditions. For some people involved in your post-natal care and in the care of your baby it will be the first time they come across these conditions. They will try to do their very best for you, and sometimes when trying to be helpful may say unhelpful things. You can say ‘this is how I’d like to talk about my baby until we know more’.

Other caregivers might have had some experience with another family and want to share this with you. However, there are many different reasons why a baby might have a DSD so it is important that any discussions are relevant to your little one.

Looking for information on the internet before having initial details on the reasons for your baby’s DSD can add to confusion and sometimes misunderstanding. Use recommended websites (for English language including our resources area, with further signposts to various related DSD conditions).