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[Last updated 23 Aug 2011]
In August 2010 a parent member of the UK group pointed out that there wasn't much information on our site covering parents' issues. We agreed with this and explained that we had always found it difficult to get parents of young children involved in helping to develop the group, and with advocacy in general (see how few parent stories have been submitted for our Personal Stories page). She offered to assemble some information for a parents' page on the site, and this is an early version of this material, with some additional resources pulled in from our 'Links to Other Sites' page. Since that time she and another AISSG UK parent member have gone on to develop a separate site, dsdfamilies.org, devoted to parent/child/adolescent issues and launched in July 2011. Our two sites/organisations will work together to cover issues relevant to all situations and age groups.
The parent mentioned above provides an introduction to this page, as follows:
"I gave birth 8.5 years ago to my first child, a beautiful baby girl who was diagnosed after about ten days with PAIS.
At the time of her diagnosis we sought information about what this would mean for us and for her, but we did not find, nor could anybody give us, the answers we badly needed then, from: what do I say when she plays mummy with her dolls, when she pretends to be pregnant with her dolly, will she be able to play in the paddling pool with our friends' kids, will she play with boys’ toys and question her sexual identity, to: how and when are we going to tell her about this condition, how can I empower her, how do I deal with her privacy. When we left the hospital for the last time, one of the doctors who diagnosed her gave us the most valuable advice: ‘Don’t lie to her, however difficult it may be, don’t lie’.
Since, we have seen (as much by choice as anything else) very few doctors. We concentrated on extending our family, and on enjoying our young daughter (who did play in paddling pools, played mummy, occasionally played with boys’ toys but I learned that all girls do that. And when she was a four your old ‘pregnant’ mummy I gently explained to her that some mummies adopt, and that some mummies find it very difficult or impossible to grow a little baby in their tummy).
At 8.5 years old, we have now come to a stage though whereby I still don’t want to lie, but where I am really struggling to imagine the right words, pray that I won’t say the wrong ones, and am uncertain about the ‘sequencing’ of the story she must be told. So, after having ‘postponed’ letting PAIS become a big part of our life, we joined the UK AIS Support Group 6 months ago. It has been liberating and extremely reassuring to discover that this is a very professional and active group keeping the medical community on their toes as well as instructing them, providing support and advice to fellow affected members, and following and contributing to coverage of AIS in the press.
I have also looked at support groups in other countries and have been touched at how other parents share and express their anxieties. Indeed, Mercedes, "how to find the words that tell the truth but that won’t hurt our children" (from the website of the Spanish support group). To the authors of Our 12 Year-Old Selves I want to say: "I am sorry that this has happened to you. Please know that because of your advocacy and your openness, many, many parents are now more determined than ever and better equipped to ensure their children will not have to go through that same suffering."
Over time, hopefully, this section on the website can be further developed to support parents, in dealing with a diagnosis and in empowering their child to lead a full and happy life. This can only happen if new insights, further advice, more experiences are submitted. Please, if you are a parent, a young adolescent, a specialised psychologist or doctor in this field, or an adult who has been there, lend a hand."
Complete Androgen Insensitivity Syndrome. PDF versions of a 28-page parent/patient booklet on CAIS written by Dr. Garry Warne, a paediatric endocrinologist in Australia, with help from the UK AIS Support Group. There's an English version, a French version (translated by French member of the UK group), a German version (translated by member of our German sister group XY-Frauen) and a Spanish version. To obtain copies of the officially published hardcopy (English) version, to give to relatives, patients etc., see our Literature page.
The American AIS Support Group runs a lively email circle where parents can be totally open and honest about their queries, anxieties and successes. An army of sensitive, supportive, experienced and witty parents, with a paediatric endocrinologist standing by in the wings, are all set and ready to help. For information on the circle, and on how to join it, please visit the Parent Corner page on the AISSG-USA website (http://www.indiana.edu/~ais/html/parent_corner.html).
The Consortium on the Management of Disorders of Sex Development has published some useful handbooks. The Mum who introduces this web page says: "I have only looked at the Handbook for Parents so far. A very good book and using the most specific language I have found so far; I would have loved to see more ‘Questions and Answers’ in the age group related chapters. One of the strongest features of the Handbook, in my view, are the 'Thoughts by Adults with DSD' and the 'Letters from Fellow Parents'.
Lawson Wilkins Pediatric Endocrine Society and Pediatric Academic Societies Mini-Course on Disorders of Sex Development (DSD) – When To Tell the Patient? (May 2009). Presentations posted on the Accord Alliance website. The Mum who introduces this web page says: "As a parent, preparing to tell my daughter, I am in particular grateful to Katharine Baratz (young AIS woman) and Dr Charmian Quigley (clinical AIS expert) for their very instructive and sensitive presentations in this series."
Katie Baratz Interview. The Mum who introduces this web page says: "While the LWPES/PAS publication by Katie Baratz (see above) may be rather academic, this Marie Claire magazine interview with Katie is a very accessible and moving story about how she found out about her condition and how she ultimately embraced it."
The (former) Intersex Society of North America website offers some Tips for Parents. The Mum who introduces this web page says: "Because of my own circumstances, I identified very strongly with No 1 (Know what you are dealing with), No 3 (Minimise the number of examinations), No 6 (Take your child home and welcome it in your family; become a mummy and a daddy), and No 13 or 15 (Can you talk with someone who has had any treatments or is a parent)."
The Mum who introduces this web page says: "The Handbook refers to a support group for parents of intersexed children: http://parentsinx.org/. This is a very applaudable effort, albeit in need of new members, to create a lively interactive platform for parents."
Another parent commented: "My quick reaction is that this handbook not what I would be looking for - I wanted something that tells me: this is dificult, but here are some ways you can try to manage it. This booklet takes the line that this is difficult, this is difficult (x 5), and when you get to the really interesting stuff (what to say, how to manage it in day to day life) they refer you to specialists. But it's not easy to find a psychologist with experience of these conditions. Having said that, we are all different and maybe other parents might find it helpful. Clearly fellow parents have put effort into writing this as well as translating it."
The Johns Hopkins booklet (Syndromes of Abnormal Sex Differentiation - A Guide for Patients and their Families) has been around for some years now. It concentrates on the medical science behind intersex conditions. The Mum who introduces this web page says: "It remains very accessible though and is really helpful to understand the nuances behind different syndromes of sex differentiation".
The website of the Hospital for Sick Children, Toronto, Canada, offers an animated learning facility (Child Physiology: Sex Differentiation) to help children learn about sex development. The Mum who introduces this web page says: "Currently, I am using this resource to inform myself; and I can imagine using it to help my daughter understand her condition".
Katrina Karkazis is a Senior Research Scholar in the Centre for Biomedical Ethics at Stanford University and the cover blurb for her book Fixing Sex: Intersex, Medical Authority, and Lived Experience (Duke University Press, 2008) says:
In 'Fixing Sex.....' Katrina Karkazis examines contemporary controversies over the medical management of intersexuality... from the perspectives of those most intimately involved. Drawing extensively on interviews with aduts, parents, and physicians, Karkazis reveals the complex reality of how intersexuality is understood, treated and experienced.
A CAIS adult commented: "Of all the books on intersex, this is probably the one that I would recommend parents to read, because it closely examines the discourses operating in society which govern how intersex is 'treated' (in both senses of the word) and it looks at the personal viewpoints of all parties involved - adults, parents and doctors. Chapter 6 is titled Wanting and Deciding What is Best - Parents' Experiences."
The Mum who introduces this web page says:
"Karkazis’s book provides an admirable analysis of the dark past of intersex and more recent attempts, some more convincing than others, to improve care. It is written in a very accessible language. Case-studies are all situated in the USA. Whilst parents will be able to identify with many of the circumstances described, it still leaves us hungry: we read so much about how ’not to do it’, but can someone please tell us ‘HOW to do it’. One of the key messages for parents is this (page 179):
It is my sense that parental adaptation to the condition may be the most important factor for determining the child’s quality of life; (...).
See here for a news release, with a short interview and podcast, with the author. Note, most importantly this comment at the end of the release:
Karkazis also thinks brand-new parents need to get the message that a baby’s intersex diagnosis isn’t a calamity. We need doctors, Karkazis said, who will tell these worried parents, “I’ve seen this before. It’s OK. There’s no reason your child cannot have a marvellous life".
See here for further details on the book and the author."
This book and others are included under 'Recommended Books' on our Literature page.
Another group member (mother of PAIS child) wrote: The Mum who introduces this web page says: "One book I found particularly useful is not about AIS but about surgically shaping children, and which has a section authored by a friend of yours, I believe. I definitely believe that all parents with PAIS children should read this book before allowing any kind of surgery to be done to their children".
The book is Parens, E. (Ed.) Surgically Shaping Children: Technology, Ethics, and the Pursuit of Normality (Johns Hopkins University Press, 2006), and some chapters of particular interest are:
Chapter 1 - Morris, S. G. Twisted Lies: My Journey in an Imperfect Body. This chapter was written by Sherri Groveman Morris, who has CAIS and is the founder of AISSG US. This chapter does relate to AIS.
Chapter 13 - Feder, E. K. “In Their Best Interests”: Parents’ Experience of Atypical Genitalia.
For information on this book and others see under 'Recommended Books' on our Literature page.
Chapter by Ellen Feder in Kittay, E. F. and Feder, K. F. (eds) The Subject of Care - Feminist Perspectives on Dependency (Rowan and Littlefield, 2002) as follows:
Feder, E. K. Doctor’s Orders: Parents and Intersexed Children.
Ellen Feder uses Pierre Bourdieu’s (French sociologist) concept of dispositions/habitus to argue that interactions between doctors and parents actually hinder the latter in carrying out their duty of care towards their intersexed children.
Katy No Pocket. A children's book, first published decades before AIS was understood, which many parents find helpful when discussing the impact of AIS with their affected daughters.
Tel Me About the Night I was Born. The Mum who introduces this web page says: "I was delighted when I found this book about adoption, as it puts across beautifully that one becomes a family, a mother, a father, a daughter, a son, through the act of loving and caring."
Hair in Funny Places by Babette Cole (author of Mummy Laid an Egg). The Mum who introduces this web page says: "As a mother of a PAIS child, I have never got a book in our house that would describe what 'normal' physical development is like. I was afraid that if my daughter saw it, she would take for granted that this is what would happen to her. I am not sure anymore if that is the right approach. Should she know what is 'normal' to better understand why she is 'different'? (psychologists and other parents, please discuss!). However, I can really imagine how Hair in Funny Places will allow my child to understand more clearly how her body will develop differently (the book covers puberty for both boys and girls, but until a parent of a boy can confirm, I would only recommend it for girls). The book introduces in quite an amusing and certainly very accessible way the effect 'Mr and Mrs Hormone' have on the young body. I think the 'objectification' of the hormones makes it also easier to understand how a 'replacement object' like medicines can assist our children to develop. The fact that the book describes 'normal development' as also a bit yukkie sometimes makes a welcome change."
A 33 year-old CAIS member of our sister group GRAPSIA in Spain produced a beautiful story (Pipo and Pepo, The Two Little Explorers - in Spanish only until further notice) to help parents discuss AIS with their child (as well as to demystify doctors and hospitals). She recounts how she was inspired by another affected adult who said, during one of their regular debates on ‘how to tell’ and ‘what to tell’, that ‘La verdad tiene que estar desde el principio ahí, en forma de cuento’ (The truth should be there from the very beginning, in the form of a story). The story is truly delightful, both in words and images; the following short summary cannot do it justice:
Pipo and Pepo are two little explorers [gonads/testes], who are just a bit smaller than a ping pong ball, and love 'travelling', and sliding up and down. During one of their far flung adventures the little explorers get stuck and try to escape. While they are hammering away at creating an escape route they hear the voice of a little girl saying ‘Mummy, daddy, my tummy is aching so much...’. The little girl, Marta is seen by a lovely doctor who explains things to her astonished parents and says that the best thing would be for him to help the explorers get back to their little cabin inside the girl's tummy. He reassures the parents that this is important because Pipo and Pepe carry with them important tools [hormones] which will help the girl grow up healthy and happy. The author describes the gentleness of the girl's parents as they prepare their daughter for an operation [hernia repair], and the childly innocence of Marta as she discovers her stitches. Soon afterwards, reassured that she can play and jump and cycle, Marta joins her friends and tells them about the operation. She also tells them about the two little explorers who now live happily in her tummy, but how later she may set them free. But first she might like to join them on their adventures because she too has the spirit of an explorer!
The story's author feels this story is aimed at children between 5 and 8 years old, depending on the maturity of the child, and when parents are ready to explain. Please note that we are in touch with the Spanish support group about producing an English version of the story.
The Mum who introduces this web page says: "If these UK Parents’ Pages would award a ‘2010 Prize for Most Outstanding Contribution’ then surely Pipo and Pepo would run away with it. And very deservedly so! On a personal note, I would very much hope that Marta soon will introduce us to a friend who could tell us a bit about not having periods, and about not growing babies in her tummy. And perhaps there could be another friend, a little boy who plays football better than any of the other boys in his school, and who is just a bit different."
The parent of a PAIS boy commented on the latter: "My opinion on the story [about a special boy] is that we can make comparisons indicating that things are different, but not saying one is better in any respect than the other. I believe that the hard truth is easier to teach children when they are younger, rather than give them soft fuzzy ‘everyone is perfect’ views and then reveal the truth later…. Therefore, I would hesitate on putting a story together or reading a story to my son that said that the boy was better at ‘sport’, ‘reading’, ‘maths’, almost as a compensation for not having ‘normal’ sexual development. The truth of the fact is that a boy with this condition may not be better at anything obviously masculine…. My son is amazing on all aspects of his development, however that may just me being biased because he’s my charming son!!"
I Don't Have Your Eyes is a book on adoption recommended by the adoptive mum of a DSD boy: Excerpt:
I don’t have your eyes… but I have your way of looking at things. I don’t have your ears…. But I have your way of hearing those in need. I don’t have your nose… but I have your way of stopping and smelling the flowers…. I don’t have your height … but I have your pride which makes me stand tall…
There is much useful information to be found in journal articles. See Truth Disclosure/Psychology references at the foot of our 'Obtaining/Facing Diagnosis' page.
This section is where we post submissions by adults and parents: a) adults offering advice to today's parents of young children, based on their own experience of learning about their condition and providing advice on how they would like to have been told, and b) parents describing their difficulties and their successes. We are not seeking personal stories as such (they belong on our Personal Stories page) but specially focused material about issues that parents will face, including perhaps the question of disclosure to the wider family (so as to alert any maternal relatives who might be affected or be carriers).
If any potential contributors are unsure about writing in English, we have members in various European countries who can help with translation.
A member of the UK group in Sweden wrote (Sept 2010):
I'm a mother to a 8 year old girl who was diagnosed CAIS when she was about 8-9 months old. We live in Sweden and the contact with doctors, psychologist and others have been sometimes good and sometimes bad. Our girl already knows that she not going to be pregnant. When she was about 3-4 years old we told her, that not everybody can be pregnant and have a baby in their stomach for different resons. And that there are so many children that need a mother and that she can as we said - travel to other countries and adopt children. She sometimes talks about how many children she is going to adopt (at one time seven children) and fantasize how it's going to be in the future and it's so natural for her. She also knows that she is going to take medicine to get breasts and so on. She don't have her testes [so won't produce sex hormones]. She was operate when she was 9 months old. Her doctor told us that she maybe could develop cancer. I've followed the disscusion about leaving them or take them out, but I feel it was the right thing to do with the information we had at the time.
The psychologist told us that it's important to say that it's her body that
lack hormones not something that she as a person lacks, so she don't think
that it's something wrong with her as a person. The psychologist also said
that we answer when she have questions and don't talk so much about it other
times. The psychologist also belive that our girl dosen't have to know anything
more at her age about her condition. They are going to meet each other when
she's going to take the medicine and gradually our girl is going to be more
and more aware about the condition. But that it's imortant that when she is
18 years old she knows everything.
My thoughts about the some of the questions: What do I say when she plays mummy with her dolls? When she pretends to be pregnant with her dolly? Will she play with boys' toys and question her sexual identity?
I think it's important that she can play mummy with her dolls and pretend
to be pregnant with her dolly, and some other time talk about the condition.
For example read a childrens book about adoption and then talk about that
not everybody can be pregnant. I have encourage my girl to play with boys
toys, with or with or without CAIS. I have believed long before I got children
that it's time to take away labels as boys and girls toys, colour and so on.
Our girl is very "girly" but likes to do "boys" things
too. I think in the world we live in now it's important for us parents that
have children with different conditions to not forget that teenagers without
conditions also question their sexual identity, feel that they are born in
wrong gender or discover that they are homosexual and so on. Somethings that
our children are going to experience are same as other childrens experience.
This is what I experience in Sweden and I know that it probably is different in other countries, but now we can share it with each other. It has been difficult to get in touch with other parents here in Sweden and I'm looking forward to see how this is going to develop in the support group. If there is something I can help with I'm willing to contribute.
A CAIS adult wrote (Sept 2010):
I was 8 years old when I had my first surgery to remove my gonads. At the
time, my parents did not have a name for AIS (we didn't find this out until
I was about 18 and that was by reading about AIS in Good Housekeeping
My parents told me at 8 years old what my specialist had told them in laymen’s terms, i.e. my ovaries had gone funny and they needed to be taken out to stop me being sick later in life (they told my parents cancerous - but this wasn't passed on to me thankfully), I was not going to have periods, and I would not be able to have babies. Although I presume that you [mother who initiated this page] may now know more than my parents knew, I am still quite grateful that this is all I knew as an 8 year old.
After the surgery (I had time off school) I told most of my classmates what I had been told, and as my parents had told me, that I was special. I was never treated any differently by any of my classmates.
If I was in your position, I wouldn't worry about her playing mummy or playing with boys' toys, these are things that all children do naturally with different sets of friends. I used to play Mummy/Barbies with my sister, but as soon as my (boy)best friend came round we would play with Lego/Cars.
(See Caroline's story our Personal Stories page.)
A 'low-grade' PAIS adult living as a woman wrote (Sept 2010):
When I was born I looked fairly normal although my Dad says I was small for a 'boy' and it wasn't until pre-teens that abnormalities were noticeable - up until then any comments about "should've been born a girl" etc. were taken as a sign that I might 'grow up funny' by family and friends. Anyway, I developed hips and subsequently female areolas/nipples without having all the male stuff going on. I saw a GP when I was 15 but felt very intimidated by it all and didn't go to another until I left home (aged 18). Recent research brought me to this OII quote:
For those with grades 2 through 4 the advice of specialists with knowledge of AIS is needed to decide on the best sex of rearing. This decision should be made expeditiously but not in haste and only after complete information has been gathered. Cosmetic genital surgery in childhood is an area of controversy (http://www.intersexualite.org/AIS.html).
I realise that medical advances have been phenomenal in recent years, particularly in genetics but I do so wish things had been investigated properly in my teens instead of assuming I had something like Klinefelter Syndrome and would invariably be happiest if restored to full maleness. Actually, I had minor deformities more akin to AIS Grade 2, which I don't think occurs in KS ? It's unlikely they would've considered raising me anything other than male in those days anyway (1970s). The healthcare system seemed very patriarchal and my parents, unaware of anything to do with intersex, just did their best to live with a dysfunctional teenager.
A woman with XY Gonadal Dysgenesis (Swyer's Syndrome) wrote (Sept 2010):
Well things were very different when I was diagnosed and my parents were
advised by the doctors not to reveal my true diagnosis because it would have
horrific psychological consequences. They were advised to say "my ovaries
didn't work and if they didn't come out they would turn cancerous". As
if [saying] that doesn't have consequences. I only know all this because I
accessed my medical records and there it was in black in white. I believe
the condition I have does increase the risk of cancer [compared to say, AIS,
see Dr. Naomi Crouch's information here]
and indeed the tissue they removed was showing cancerous changes so I guess
it was the right decision to remove them, just done very badly. Once you are
lied to, it is very difficult to trust again
I would like my parents to have been better supported and educated appropriately. I would have just liked my parents to have been honest with me and told me the truth. The way it was handled has had consequences because although I don't feel resentful towards my parents the whole situation has made me feel ashamed and embarrassed and it is something that is never ever discussed in our family and nor would I want it to now, it is too late.
If I could advise any parent it would be 'PLEASE BE HONEST,' let the child make choices for themself or at least be heavily involved in that decision-making process. I would also advise that they let the child be the one to decide who should or should not be privy to their diagnosis. It is the child's diagnosis not the parents'. Confidentiality should apply to a child and they deserve that. Lastly, I would advise they bring their children to the support group so that they can see they are not alone or unusual and are actually normal and beautiful human beings!
(See Samantha's story our Personal Stories page.)
The mother of two CAIS daugters wrote (Sept 2010):
I have two daughters with CAIS and one daughter without. All three are bright and gorgeous (as I am often told). They all have their different personalities of course, but nothing sets them apart at all in relation to AIS. They are all very sporty and like experimenting with fashion etc.
We first discovered our eldest had AIS when she was 1 day old and so were able to have a blood test for the other two at birth. I think I worried more about the future than my husband who tends, perhaps like many men, to see things more in perspective. Although our close families knew, we very much kept things to ourselves which was, in my view, the right thing to do for us. It would have been nice to sound out worries to friends but I always felt that this was their bodies and their business. We were entrusted with this information but it would be their decision who should be told in the future.
Now aged 17 and 14, they both know everything about the condition and are pleased that only closest relatives know. They have not wanted to share it with friends and, as friends come and go when you're young, I think that's probably for the best at this stage.
Although they both very occasionally have sad moments about it, they seem too busy with getting on with their teenage lives to dwell on it too much. I sometimes think the eldest is dealing with it too well as she doesn't talk about it quite so easily as her sister. For us, it's become a lot easier since they've had full knowledge. Worrying about what, when, where and how much to tell them and what their reactions would be haunted me for years, especially when alone with my fears in the dark in bed at night when things always seem worse! Yes they were surprised and yes there were tears, but nothing as devastating as I'd imagined.
We always said, even to the daughter not affected, that not everyone can have babies, but didn't say much more until the end of Year 5 (aged around 10 / 11) just after they'd had sex education film/talk at school. I didn't want them to feel awkward and left out during these lessons and thought that going over information about sexual development at school would be useful as a precursor for more information about themselves. I told them at this age about infertility and the physical affects of AIS, but waited a couple of years before going into greater detail about testes and X Y chromosomes.
I know there will be many anxieties and perhaps some trauma ahead, but all we can do is continue to support them in every way possible and be there when they need/want us. Life, as they say, comes with no guarantees and there really is no reason that they'll be any less happy or fulfilled in theirs as any other child with other hurdles along their path.
A CAIS adult wrote (Sept 2010):
My parents never told me the true nature of my inability to have children.
Following an accident, I had been told I'd never have periods and that I
needed to see a gynecologist to "get things checked out". The doctor
I was referred to at 16 explained that my "ovaries" had not developed
correctly (due to hormones my Mum produced during pregnancy) and that they
needed to be removed before they became cancerous. I was told that my womb
had not formed properly and I would never be able to bear children. I went
in for the operation but never recieved any counselling and never had any
follow-up appointments when I was older except those relating to HRT.
However, when I was 27, I read an article in a scientific magazine and approached my doctor with a number of questions regarding my condition. The revalation that I had CAIS, and that there was even a support group to help people like me come to terms with this condition, came as a huge jolt to my emotions. The doctor showed me my medical notes and even took down her text book to aid my understanding. When I was 12 months old, I'd had a hernia in my groin which turned out to be a testis and it was at this point the doctors found I had XY chromosomes despite my externally female appearance.
I had been married for two years and although I had known I couldn't have
children since I was 16, I initially struggled with how I would explain this
new information to my husband. I also was confused and hurt as to why my parents
hadn't told me, and why they'd left me to discover this by myself. I have
two older sisters, one of whom had just had her first baby daughter, so I
also felt I was in the position of having to find out if and how they might
be affected as potential carriers. I remember feeling embarassed and awkward
telling my husband, wondering if he thought I'd known all along and I'd tricked
him. Luckily for me, he was extremely understanding and gave me the strength
to confront my parents and helped me to break the news to my sisters. My parents
denied any knowledge of the condition, even when I explained that I had seen
my medical notes which read something akin to "testicular feminization
- parents refusing to accept diagnosis".
Over the next few years I came to terms with the idea that my parents may have been kept in the dark as much as I had been, but there were doubts. For instance, memories of my Mum telling me when I was about 8 that not all women could have children and that giving a home to a child without parents to look after them was an option.
Then, when I was 31, I developed a hernia in my groin..... just above the
small scar where I'd previously been operated on as a baby. I had to be taken
into hospital for investigation and I rang my Mum to let her know what was
happening. She rang me in the hospital later and told me that she remembered
something.... she'd remembered that "whatever it was they found when
I was a baby.... they'd put back because they weren't sure what to do".
I was flabergasted. She'd known.
It turned out that the hernia was caused by a remaining testis which had developed a malignant seminoma.... a cancerous tumour. Both were removed and for the past four years I have been following a program of scans and blood tests to check whether the tumour spread to other parts of my body. I was also offered genetic testing which helped to benefit my sisters. The one who had a daughter is not a carrier but the other is a carrier just like my Mum.
I'm not entirely sure what my parents should have done. I suspect they may have been very confused about the diagnosis and probably didn't understand the full implications for me and my sisters. They may even have been encouraged not to disclose the full details to me... certainly the gynecologist I saw at 16 did not feel the full details should have been disclosed and neither did the other four GP's whose care I was under over the proceeding 10 years.
Although I now have fairly normal contact with my parents again, I still feel that they experience a certain amount of shame concerning my condition despite the fact that I have experienced a degree of liberation from finding out. I still wish that they'd kept their own notes at the time around my first operation so they wouldn't have to rely on patchy memories which were mixed up with the fears and emotions they undoubtedly felt at the time. I think it's unfortunate that they didn't find the courage to properly explain things to me so that I wouldn't have to find out from a relative stranger and suffer the turmult of not knowing who else "might know already". I guess, I wish they had encouraged me to engage with the AIS Support Group and meet others going through the same problems so I might not have felt like such an outsider. And I dearly regret that I had to be the one to explain that it wasn't just me [but other family members] that may be affected. And ultimately, whatever the doctors advised my parents to do... it is only my parents who really felt the consequences of the approach they chose to take.
But I am very lucky. I have a supportive husband who helped me to understand that my parents probably just wanted to protect me. I'm lucky that the tumour was discovered in time. It's just a shame that in the end, it all came down to luck.
We asked for clarification of "it is only my parents who really felt the consequences of the approach they chose to take". The contributor explained:
I guess what I mean is that it's very easy for a doctor to tell parents to keep things secret.... they most probably won't be around any more when the "child" is now an adult. It's your parents who have that vested interest in your happiness and it's they who'll (hopefully) be around to witness the results of their choice. I mean, if I'm cross with the doctor, so what. If I feel betrayed by my parents and cross with their treatment it's a different scenario. They'll care (hopefully) I'll care, siblings will be affected, grandchildren etc. All that upset just because a doctor didn't describe things on a level my parents could understand and (possibly) encouraged them not to tell me about it. Ultimately, I'm coming to terms with CAIS, my husband seems fine, my sisters are fine, but my mum and dad are going to have to live with the fact that their actions might have contributed to me becoming seriously ill. The family GP who they dealt with us back then is long dead so even if he would have given two hoots, he certainly doesn't now!
Basically I wanted to try and make the point that parents really need to weigh up the pros and cons for themselves and that "the doctor told me to" is really a cop out. Even if true, parents have to realise that it won't be "the doctor" dealing with a fractured family and the guilt of their daughter sitting in hospital not knowing if she's going to die of cancer because they couldn't face telling her the truth, because they were so stressed out that their baby was sick that they forgot loads of details and never made notes, and basically relied on the doctor and assumed they didn't need to take responsibility.
A mature AIS woman wrote (Sept 2010):
I was brought up in a time when little was known about AIS, even amongst doctors, and when society was much less open about things to do with sex. But even so, I wish my parents had not been so deferential towards doctors and instead of accepting the minimal information they were given, had 'taken on' my condition as a project and had pushed to find out as much as they could, and to sort out what could have been sorted out, i.e. a) professional psychological counselling/support, and b) recognition of... and a plan to resolve... my issue of having a very short vagina. Neither of these things was addressed until I made arrangements for myself, well into adulthood.
My parents told me around age 12 about a childhood hernia operation, and the probability that I wouldn't menstruate or be able to bear children (probably all they had been told by the paediatric surgeon), and that was it... until I was in my late teens, when I was sent to see a specialist for the first time, for an official diagnosis.
Infertility has always been the very least of my worries, and I feel that far too much emphasis can be put on this (from my experience at least). And I don't agree with the notion of parents not bringing up the subject of what might have 'gone wrong' unless the child asks questions. I took the fact that my parents never talked about my situation (at any stage, either in childhood or adulthood) as it being so embarrassing, so taboo, so shameful, so secret, that it could never, ever be talked about. There was no way I was going to summon the courage to bring up the subject myself. I deduced on my own during my teens that I had an intersex condition and I diagnosed myself correctly from medical books well before any clinician made this determination, but kept the information to myself.
What I would really have liked is for a friendly female counsellor or psychologist to have intervened, to have taken me away from the family situation (and the intimidating male doctors I always saw) and who could have a) provided the expertise and the space to help me find the words to express my fears and concerns, and b) liaised with suitable specialists on my behalf to get my short vagina sorted out. I didn't have the courage to seek help with the latter until I was in my late 20s, and that problem, and the chance to talk about my AIS, wasn't finally resolved until decades later.
I think it's very difficult for parents of an intersexed child because the educational system doesn't pay attention to life skills, or introduce the notion that intersex conditions exist and that young people might one-day be parents to such a child. This means that new parents often have to start from scratch, at the time of a major life event (childbirth), and embark on a steep learning curve in order to grasp some complicated medical concepts and deal with their own emotional reactions. Parents need to insist on professional support (clinical psychology) at the point of diagnosis (hospital), to help them sort out their own issues before they can embark on the task of, in time, helping their child. I also feel they should take advantage of the existence of the support group and go regularly to group meetings during their offspring's childhood, in order to learn from the all the different experiences and insights discussed there, amongst parents and adult XY-women. They shouldn't wait until the prospect of "I now need to tell my 10 year-old... my teenager... something, so what should I do?" raises its head. It's too late then, because it's not something you can get a crash course on, or a fast-track route to. They need to gradually prepare themselves over a number of years.
I don't feel any bitterness whatsoever towards my parents, who were themselves a product of an even earlier and less open society than the one I grew up in (my mother still won't talk about my condition but I accept that now) and who provided a loving and secure upbringing. But I just wish they'd had the confidence to be more demanding of the medical and allied professions, and to realise that for me, having AIS was never an infertility problem (or a gender identity problem), but a problem of a) shame, stigma, freakishness and isolation, and b) an acute anxiety over whether I would ever be able to have adult relationships. Neither of these issues was addressed in time for me to even consider secondary issues such as infertility, and to imagine that I might ever be in a position to adopt children.
There is no excuse for today's parents not to take on their child's conditon as a project and to be demanding in their information-seeking. Adult women affected by these conditions have made it so much easier for them, by campaigning over the last 15 years or so for changes in societal attitudes, clinical care and information availability. That doesn't mean it has to be an obsession for parents that excludes other aspects of life, but just an appreciation that it's society as a whole that determines how intersexed children are treated and not just doctors, so parents have an equal role/responsibility in important fact-finding activities and appropriate 'interventions'.
A woman with AIS sent us an account in November 2001 which seemed to be directed at parents and had a positive, upbeat message. See Kathy's story our Personal Stories page.
A 78 year-old CAIS woman wrote (Oct 2010):
As I look back over 78 years of living with Androgen Insensitivity Syndrome it is clear to me that if my parents and the doctors talked to me openly about my condition and expresssed belief that I was strong enough to live with, and handle this condition my life would have been much stronger. I would have used the energy I wasted in trying to handle my condition alone ( since everyone was uncomfortable in being open with me) in much more useful endeavours - - I would have made better choices in my life I would have used my natural talents better in shaping my life - - if those around me expressed belief in those natural talents rather than trying to 'protect' me from having to handle my condition.
Doctors wrote in my file (and told my parents ) that I must not be told of
my condition or I would not be able to cope psychologically. But, as it turned
out the attempts to keep the information away from me led me to have rather
severe psychological difficulties with the awareness that there was a 'secret'
about me that was so awful that no one would talk about it. The attempts to
save me from psychological trauma led to psychological trauma.
I had a decent upbringing in all other senses. I was a strong kid. If people had been open with me and expressed their belief in my capacity to handle this information my life would have been so much better.
See Diane's story our Personal Stories page.
See Medical Literature Sites on our 'Links to Other Sites' page for ways of accessing journal articles.
See Truth Disclosure/Psychology references at the foot of our 'Obtaining/Facing Diagnosis' page.