An information and support resource for families with children, teens and young adults who have a DSD
We are inviting guest editorials from families, members of our care team, and others who work or write on issues that affect us. If you wish to contribute to this series, please send a short outline of your proposed guest editorial to firstname.lastname@example.org
- Guest Editorial nr 1, July 2011, Becoming a DSD Dad, by Anon.
- Guest Editorial nr 2, September 2011, by Katie Baratz
- Guest Editorial nr 3, January 2012, Here’s to a happy engagement!, by Stenvert L.S. Drop
- Guest Editorial nr 4, April 2012, by Katrina Karkazis
- Guest Editorial nr 5, July 2012, Olympics Season
- Guest Editorial nr 6, Nov-Dec 2012, Growing up and then adding DSD to the mix.
- Guest Editorial nr 7, March 2013, The real difference, by Sara
- Guest Editorial nr 8, December 2013, Season’s Greetings, by Ellie – dsdfamilies.org administrator
- Guest Editorial nr 9, November 2014, What we wish our parent knew, by Inter/Act
Guest Editorial nr 10, February 2015,What to Expect When You Are Expecting? by Mum of A
Meet the right people before you give birth - When you learn during your pre-natal 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.
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.
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.
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
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.
Notes from dsdfamilies
We are grateful to A’s Mum for this informative and honest piece. Below we add some further thoughts and tips for mums and dads in similar circumstances:
Where to start?
If you want to inform yourself prior to the birth, then do have a look at the brochure ‘When your baby is born with genitals that look different – the first days’. It will give you some perspective on what might happen and the time frame. You find the brochure on this website.
Another place to start learning about dsd is the www.aboutkidshealth.ca website, and search for DSD or Sex Development.
This information can still be quite difficult and overwhelming but it is a good and friendly starting point to understand how variations in sex development occur, to learn that genitals develop along a spectrum, and to learn about growing children and puberty.
In general, we would advise to step away from Google. Avoid general searches and only visit recommended resources. There is a lot of outdated information on the Internet often produced with a sensationalist spin. We are trying to produce new condition specific materials for this website too.
It sounds like common sense that you would be given some private space, but maternity wards are busy places and a private room can often not be guaranteed… We do have families who were placed on general recovery wards with only a curtain for privacy… That is not helpful. Keep revisiting this and insist. Say ‘this is important to my family’.
Sometimes, in smaller maternity hospitals, staff might give you a bit too much privacy, simply because they don’t know how best to support you. Take control and just say ‘I understand that you are not familiar with these conditions and that we are waiting to get other experts involved but in mean time can you help me with feeding/bathing/going to the toilet/ pain relief/ etc.’
The Bounty Lady and difficult questions
If anyone asks you while you are in the hospital whether your baby is a boy or a girl at a time when you are not ready to discuss this, just say ‘I appreciate you asking, but for now we would really like some private time’ – be friendly and firm (practice at home), and don’t be scared.
You may feel concerned that everyone will know what is going on, as if there is a big spotlight on you. That’s really not the case and in general people know that the birth of a baby can be really stressful. They will understand that whatever‘s the matter, you need to be given some space.
And if the Bounty lady does come – just be pragmatic. Ask her what the difference is between the girl and the boy bag and choose the one that you fancy most! It really doesn’t matter.
(And if this is your first baby: Bounty ladies come round in most UK hospitals shortly after the birth of your baby with a goodie bag of 2 free nappies and very small pots of cream for baby’s bottom and breast pads etc. and/but also with a form you need to register for child benefit. They are called Bounty ladies, because the company who organises this is called ‘Bounty’). Really, the only thing you need from that bag is the child benefit form.
Ultrasounds are sometimes used to assess the internal development of our babies, and to explore e.g. if there is a uterus or gonads (ovary, testes) inside your baby’s pelvis. However, the reality is that even very experienced ultrasound technicians and consultants may misinterpret these on ultrasound.
To really understand how your baby developed, you need to be patient and look at ‘the bigger picture’, i.e. all the information that is gathered about your little one and all the tests that are done and include an experienced DSD team in all discussions.
If you do produce a birth plan, be clear of what the local hospital should do when baby is born (inform DSD team/point of contact, what tests to start), and plan for when and how to transfer mum and baby to the DSD team – obviously allowing for exceptional circumstances.
Lots of support is directed at mums and babies, and sometimes that can be quite hard for the dads: how best to help in circumstances that are so unfamiliar (be it dsd or having a newborn!).
Take the time to talk to each other about what is happening and how it makes you feel. Are you both on the same wavelength?
Make a list of questions you have about the short term, the medium and the long term…that’s how you both learn about each other’s hopes and worries, and how you become and stay a team.
After birth, take charge of bathing, help with burping, eat healthily and look after yourself too – not just partner and baby and other family members.
Some dads find it tricky to talk about sex organs/genitals or sexual pleasure of their new born and prefer to leave it to their partner and the doctors. Try to remember that you are a crucial advocate for your child, so take the opportunity to learn and be a part of all discussions.
Other dads can’t take time off work very long – and find this adds stress in dealing with questions. Think ahead about how you will manage this. Do you have a friend to talk to before you go back to work – talking with a friend will help prepare you for dealing with questions and feelings of uncertainty and worry that you may have. Some dads feel they are not ready to talk with their friends about this and choose to talk with the dsd psychologist, or specialist endocrine nurse.
At all times, try to remember that dsd is only a small part of your beautiful baby and that so much worry is concentrated in the early days.
And that with your love and support your child will grow up to be a happy and confident young person.