An information and support resource for families with children, teens and young adults who have a DSD
Other things you may find usefulFixing Sex – by Katrina Karkazis
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 parent volunteer of dsdfamilies.org comments: "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. Parents will be able to identify with many of the circumstances described, yet the book still left me 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."
Mini-Course on Disorders of Sex Development (DSD) - When To Tell the Patient? Lawson Wilkins Pediatric Endocrine Society and Pediatric Academic Societies. Presentations posted on the Accord Alliance website.
Patients and Parents in Decision Making and Management, Final draft of chapter published in Balen A. et al (eds.): Paediatric and Adolescent Gynaecology: A Multi-disciplinary Approach (pp. 205-228). Cambridge University Press (2004), Margaret Simmonds - AIS Support Group
"Love, too, has to be learned": Reflecting on Love in Counseling Parents, paper presented by Ellen K. Feder, American University at the DSD Symposium, October 2006
Abstract: In 2004, the Archives of Pediatrics published a Hastings Center proposal for new guidelines for treatment of intersex conditions that recommended delaying cosmetic procedures until a child could consent. In an invited critique, pediatric endocrinologist Erica Eugster wrote that a delay in cosmetic surgery would be inadvisable, not for any medical reason, but because it would impede a "family's ability to accept and unconditionally love their child." Eugster's position—one that appears to be a prevalent, if largely unspoken motivation for corrective genital surgery—raises a central issue in the management of DSDs, which is the imperative to facilitate the attachment between child and parents. This paper examines this issue of fostering attachment in the "extraordinary" case of DSDs, figured historically as "a disorder like no other," and asks how the treatment of DSD's as "disorders like many others," could provide a basis for fostering the parent-child relationship.
46,XY DSD with Female or Ambiguous External Genitalia at Birth due to Androgen Insensitivity Syndrome, 5alpha-Reductase-2 Deficiency, or 17beta-Hydroxysteroid Dehydrogenase Deficiency: A Review of Quality of Life Outcomes Wisniewski, A.B. and Mazur, T. (2009). International Journal of Pediatric Endocrinology, Volume 2009. A recently published article that reviews 35 other papers which cover quality of life (QoL) issues
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, a German version and a Spanish version.
A short Chapter on DISCLOSURE, from a longer article by the Canadian Paediatric Gynaecologist Lisa Allen, Obstet Gynecol Clin N Am 36 (2009) 25-45
Disclosure begins with the family at the time of the diagnosis and assessment of their newborn with a DSD and should be considered a lifelong ongoing process that evolves along a developmental time line. The diagnosis of DSD is both challenging to understand and challenging to explain; however, the health care team should consider themselves as having a role in preparing the family and the child/adolescent to receive this diagnosis when they are cognitively and psychologically prepared. In health care teams who care for many DSD patients, the responsibility for disclosure may be shared among team members in conjunction with the family. Guidance around disclosure may be provided by social work or other team members who have developed the expertise to work with the family from infancy. Helping families to correctly understand the child's diagnosis is the first step on the road to disclosure; families should be encouraged to gather information that can later be used to help them explain to their child decisions that were made with regard to management. Audio files of initial consultations with physicians may prevent inaccuracies in recollection. These audio recordings can be used with the patient at a later age when they have questions about the decisions that were made around their medical care. Parents can be encouraged to practice telling the ''story'' of their child's diagnosis out loud to them when they are a newborn. This practice allows for a growing comfort level on behalf of the parents with what they may perceive as difficult information, at a time when a child cannot remember. As children's questions arise, they should be answered truthfully although in a developmentally appropriate way. Some milestones in a child/adolescent's life may be natural points to disclose in a stepwise fashion about their medical history, ie, with peers' onset of puberty, with sex education in primary school, biology classes in high school, or with parenting classes. The family should be encouraged to keep the health care team apprised of what has and has not been disclosed to the patient. Parents may need separate appointments with the health care team to explore and rehearse how to disclose information, as well as to assess their own reaction to the process. It is not uncommon for parents to experience a sense of sadness and guilt at new developmental stages of their child's life. It is important for them to get professional mental health support if these feelings become overwhelming. It is a myth to believe that patients are better off not being aware of their diagnosis. The absence of disclosure can lead to angry, alienated patients who feel betrayed by the health care team and their families. It is very important throughout this process to offer contact with patient support groups. Parents often feel alone and alienated, as do patients as they learn about their conditions. The connection with a group of patients with conditions the same or similar, is key in decreasing the sense of isolation and difference that is reported from these populations.
Literature on dsdfamilies.org - Care Team Section: an interesting series of articles about the care of your child. Please note these articles were written by clinicians for clinicians, and the language used is therefore not always very accessible.
MRKH: A Guide for Parents and Guardians - very well written Guide, that will be appreciated by parents of all DSD kids.
ISNA Tips for Parents - The (former) Intersex Society of North America offers some tips for parents.