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Supporting Intersex Clients: An Assignment

December 6, 2018

 

This was originally an assignment in a midwifery course. I've shared my thoughts here in hopes it helps other birth workers serve all birthing people with dignity and thoughtfulness. 

 

 

Case Study

 

Michael and Shona and their children are dedicated to their conservative Baptist faith. Michael is a deacon and Shona ministers to children in the nursery. You have assisted them with five other births. Shona has just given birth to their 8th child. When you conduct the newborn exam you find the following genitalia: an opening that could be a vagina, a swollen area that look similar to a divided testicular sack or a labia that is uniquely formed, an enlarged clitoris/small penis. You discuss your findings with the parents and show them the baby’s genitalia. You recommend that they assess for urination and follow-up with their pediatrician within 24 hours. You continue to provide postpartum care to the baby and mother. The mother reports that the baby is urinating well.

At their two-week postpartum appointment, the couple has had the visit with the pediatric endocrinologist and she provided the following options for the couple to consider:

  • Surgical restructuring of the baby’s genitalia to normalize appearance (surgery to assure urination was not required in this case, due to urination being normal), raise the child as female and treat with hormones as indicated

  • Leave the child’s genitalia intact, raise the child as a female and treat with hormones as indicated.

  • Allow the child’s gender to develop and be defined as the child grows, raise the child as genderless, allow the child to determine their gender as it becomes clearer and treat with hormones as indicated.

The doctor informed the couple that her general recommendation is that the surgical option is not preferred because many teens and adults with intersex identify feeling distressed by their caregivers giving consent to a surgery that can never be taken back instead of leaving their genitalia intact. The doctor said that she would refer to a pediatric endocrine surgeon if the couple elected to do the surgery against her recommendation. The couple is devastated. They are struggling with the decision and ask for your advice. You direct them to the American Academy of Pediatrics position on surgical practices on infants and children with intersex variations.

 

Share how you will address this issue with the family.

 

This is such a tough situation to think out ahead of time because there are so many layers. I know that the parents would most likely be surprised/shocked and worried primarily about the physical health of the baby. So as the clinician present, I’d want to examine the baby with the parents present and engaged, detailing what I’m seeing and what I understand it to potentially mean in a physical sense first. Then, I’d want to prepare the clients for some of the next steps and what to expect at a doctor’s visit. I’d want to make sure they have a little history of what has been done in the past and what current medicine says about intersex bodies and approaches to care. Most likely, I’d offer up another handout on the lived experiences of intersex people for them to take home with them as I think this has the power to show them that healthy, happy intersex adults exist. I know it can feel so overwhelming in the moment to be given huge medical-related news and have no real understanding of what that can mean long-term. I’d also ask the clients to call or check in with me if they’d like to discuss more after their pediatrician visit or I’d do another checkup with them at home to help process and see how I could best support them.

 

Explain in great detail why surgery is considered a “human rights violation” and why the AAP recommends avoiding surgical procedures.

 

Intersex Genital Mutilation, as surgery to alter intersex traits is called, is irreversible, involuntary, and unnecessary in most cases. Many of the stories we read and watched in video form this week showed me clearly that intersex people feel violated, and stripped of their personhood in some cases, when genital or reproductive system surgery took place in their youth. This was especially true in cases where these surgeries were kept secret or purposely mis-reported to parents and/or the intersex person.

 

Surgery is life altering. Everything from fertility and sex life to the minute but important gut bacteria can be affected by these surgeries. In many cases, additional surgeries are required to repair damage done in previous surgeries. Moreover, surgery of any kind comes with the inherent risk of death. So, the fact that medically unnecessary surgeries would be performed on a person who not only cannot consent but is unaware of what is happening altogether is inhumane. True informed consent is rarely provided by medical professionals to the parents making medical decisions on behalf of their children. More than that, informed consent cannot be gained from an infant or child due to the inability to understand the information provided.

 

Finally, the Hippocratic Oath taken by all doctors mandates that no harm be done where preventable. The harm, physical, social, and emotional alike, caused by unnecessary surgery is absolutely preventable. Therefore, any medical doctor mandating or coercing parents into the decision to proceed with IGM is breaking their ethical oath of practice and violating the rights of the child.  

 

How will you best support this family as they face these difficult decisions? What might they need? How can you best determine what they need?

 

From my reading this week and what I know to be true of human being in general, I believe that the best way I can show up for my clients making challenging decisions about their children is to offer a listening ear, honest but gentle opinions/feedback if asked, and resources for further support outside my ability. I think peer support groups, therapists, and responsible medical doctors would all be beneficial to this family. But I can’t just refer them out and be done with them. I want to follow up, listening as they navigate the new world they’ve entered. I think deeply listening for what is and isn’t said and checking in to confirm what’s going on for these parents is imperative. A lot of self-judgment, questioning around what “caused” the intersex traits to occur, and confusion in general might be at play and I’d want to validate all those things as completely okay and to be expected. And then I’d want to ask questions to help them figure out their next steps. For this family, I imagine I would be more involved in the postpartum period than other clients, perhaps providing more frequent check-ins at their home along the way or staying in close communication so they know they have an ally.

 

There are considerable differences in the rate of intersex individuals born in the U.S. As you explore these numbers, what are your findings?

 

It seems that the rates are all over the place and that quality data is hard to come by in total. What this tells me is that we have been entirely too quiet for all of human history about the variation that exists among us, and this has impacted intersex folks all along the way. Prior to this week, I thought erasure other groups was common, but intersex folks are erased almost completely from the human narrative and it hasn’t really improved in the mainstream much in recent years.

 

I also learned that the rates vary so much because there are a ton of different ways an intersex person may look/exist. Because some definitions of intersex are broad and sweeping and others are limited only to conditions like AIS and CAIS, it is challenging to get solid data on the number of intersex people in America. There’s also, of course, a ton of people who are not out as intersex folks, so tracking the experiences of people in the “I” group of the LGBTQIA+ community is even more challenging.

 

How will you prepare to serve families when you discover that a newborn under your care is born with intersex?

 

I can already see that the biggest thing I need to do to prepare for coming across intersex people in my practice is to drop my judgment and tune into my compassion. Specifically, I have internal judgment about people who strictly/blindly/willingly abide by societal norms when the norms don’t apply or make sense to their lives. I know that if I have clients who are overwhelmed at the thought of their newborn baby not being “normal,” I’d have trouble quelling my internal voice of frustration. More than that, if I had a client family who decided to go through with the surgery even though no medical necessity existed, I would need extra support for myself to be able to show up for them in any meaningful way. As it is now, I struggle to talk with clients about circumcision decision when it’s already made. And though I don’t voice or show my opinions at all around this if I’ve decided to work with a client, I feel deep sorrow around the choice itself and the baby’s bodily autonomy.

 

Amanda Cagle is a professional doula, educator, and student midwife located in Orange County, CA who offers comprehensive services to growing families and birth professionals alike. Amanda can be reached via email at yourbirthteam@gmail.com or through www.yourbirthteam.com. 

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