Meet the right people before you give birth - When you learn during your prenatal care that your baby's genitals look different than expected and might need to be assessed for a DSD, it is important to be referred as soon as possible to a paediatric endocrinologist (a hormone doctor) with experience in DSD.
DSD teams across the UK and elsewhere can usually be found in larger hospitals. By doing this, you will already have established a point of contact - which will be helpful for the DSD team too. You may also get access to psychological support prior to and immediately after the birth which is really useful to help you understand the development of your baby, to help you think through what to say to friends and families, etc. In general, meeting the right experts before you give birth will put you (a bit more) in control of events after the birth.
You might not feel like it… but finding out there are complications before baby arrives is actually a good position to be in. It gives you time to plan and prepare where you wouldn't have had that opportunity before. You can talk things through, and decide what you will be telling your immediate family, and wider circles. It can also take a lot of the pressure off decision making in those very early days.
Don't ask for a 'best guess'- it does more harm than good. Any guess only has a 50% chance of working in your favour.
If you are going to google, do it only to inform yourself - Doctors have a hard- enough time figuring it out- you are not going to get a diagnosis from google. Personally, I like to be informed. I took comfort in having a (sometimes very) vague recognition of some of the terms used in meetings with doctors. I knew our best case, and our worst and I was prepared for both.
Think ahead... Ask before the birth to be allocated a side room (private room) after delivery. It should be offered, but do check. Also ask whether you may request that non-essential hospital staff do not to enter your room. Whilst your doctors, midwife and HCA will all know your circumstances the ‘Bounty lady’, porter and cleaner will not! ‘Is it a boy or a girl?’ is most often the first question that people ask. It is really difficult to answer when you are unprepared for it.
Be wary of ultrasounds... It is common to stay several days in the maternity hospital, to recover from birth and whilst you wait for initial blood results to come back. During this time ultrasounds are sometimes done to check how your baby developed internally. I only learned afterwards that ultrasounds in these circumstances can be unreliable - I wish someone had told me that.
Ask questions. Ask as many questions as you need to get an understanding. Keep a notepad, write them down. There is no such thing as a stupid question.
Part of what I struggle with... is that if my child had, for example, Osteogenesis Imperfecta, or a birthmark on his face I would talk to people about it. I would explain what it is, how it affects him (and us). I'd probably explain, in brief, how treatment and management works for him. I'd probably be proactive in organising fundraising and awareness events in my local community. It would help me to process and deal with things. That's just the way I am. But this is my child's genitals, not his bones, or his face. By doing any of the above I would be betraying his fundamental right to keeping his privates well, private. It will be his decision as to what he shares with whom as he gets older. I hope I can teach him resilience and empowerment to deal with any difficult situations. What I won't do is put it 'out there' in his behalf.
Allow your birth plan to factor in your unusual circumstances - in whatever way you need. This was my third baby, but the first I had written a birth plan for. It simply said: ‘Where possible I would like rapid skin to skin, however could you please discreetly place a nappy on the baby first.’ I wanted to celebrate and enjoy the moments after the baby's birth just as I did with my other two babies. I didn't want to be focused how it might look 'down there'. For me, the nappy would have removed the temptation to let it overtake that precious time. I talked it through with the midwife and she was happy with it.
As it turned out it didn't happen like that. Baby arrived blue and floppy (unrelated to DSD), and was whisked to the rhesus trolley. At that moment I couldn't care less what the bits looked like as long as my baby was alive. When we did get him back he was placed on my chest and I knew right then that all of my worry about whether or not I would be able to love my 'it'*baby was gone.
Mum of A, 7 months, and a great little boy. A’s antenatal diagnosis was 46XY DSD presenting with severe hypospadias & bifid scrotum. Following testing, diagnosis was changed to Ovotestis. *
I have referred to my baby as an ‘it baby’. Whilst I understand that this is not a pleasant or appropriate term it is honest to the way I felt at the time.