Fri. Jan 27th, 2023

When Jax and their partner decided to start a family nearly a decade ago, they chose not to disclose the fact that they are transgender to their medical providers.

“I already had a lot of stigmas going against me because I’m also a person of color, and at that time, I didn’t have a job, so I was on Medicaid,” said Jax, who identifies as Two-Spirit — a term used by some Indigenous people to describe their sexual, gender and spiritual identities — as well as transmasculine and nonbinary. They asked that their name be changed to protect their identity. “So I just really didn’t want to add ‘Oh, yeah, by the way, I’m trans.’”

LGBTQ health experts and advocates, as well as trans patients themselves, have long worked to better educate medical professionals — from ultrasound technicians to OB-GYNs to nurses — on how to make their practices more affirming and inclusive so that prospective patients feel respected and seen.

But transgender men and nonbinary people who are pregnant or trying to conceive are still more likely than not to face a reproductive health system that fails to acknowledge them for who they are.

That failure is often visible before a person even walks through the exam room door. On intake forms and informational websites, would-be patients are met with gendered language that telegraphs an assumption that all birthing parents are women who use she/her pronouns.

It can continue throughout months of appointments in which providers may misgender patients by neglecting to use their pronouns, or lack the familiarity with transgender health necessary to provide their patients with the care that they need.

“Expanding your family should be something joyous and exciting. And when folks embark on that journey and are met with a lack of respect or care or competency… no one wants to be in that position,” said Jess Venable-Novak, family engagement manager at the LGBTQ nonprofit Family Equality.

Practitioners have much farther to go, experts say. Change may start with adopting gender-inclusive language, they say, but it must go beyond that — to practicing more personalized, patient-centered care that gives people space to safely share their unique needs and identities, and be heard by their providers. That kind of care, they stress, benefits everyone, regardless of gender.

While the environment at the fertility center where they underwent insemination was queer inclusive, Jax said that it did not demonstrate an understanding of trans identities. The paperwork used gender-neutral language like “spouse” or “partner,” but referred to the would-be birthing parent as “female patient.”

Jax and their partner, who is also trans, chose not to share their gender identities throughout Jax’s pregnancy.

“The [obstetrician’s office] itself was called ‘women’s health,’ you know, so I don’t know if they were open or not,” Jax said. “So we were definitely in the closet during that time.”

Jax’s pregnancy was difficult from start to finish. They described a painful and traumatic insemination experience, and said they were so sick and lost so much weight while pregnant that they didn’t begin to show until their third trimester. During labor, they tore a muscle that required postpartum injury care. At the time, they said being misgendered was less at the forefront of their mind as they focused on surviving those experiences.

Now, Jax and their partner are having another child, and Jax is once again pregnant. This time, they have decided to be out as trans to their doctors. Jax said that in the years since their first pregnancy, they feel better equipped to communicate about their identity.

“I always strive to be my most authentic self, and that includes me being a trans person carrying a child,” Jax said. “I think what changed was the clarity of who I am and having the language to help me describe myself to others.”

Patients don’t exist ‘in a vacuum’

A 2019 LGBTQ Family Building Survey conducted by Family Equality found that 63 percent of queer and trans people between the ages of 18 and 35 were thinking about expanding their families, whether that meant becoming first-time parents or having more children.

These young people will be entering a reproductive care system that reflects a “dominant culture” that largely overlooks the needs of marginalized folks, including trans and queer people, said Jenna “JB” Brown, a practicing doula in Austin and an educator at Birthing Doula Advocacy Trainings.

Language is a key example of that dynamic.

“Misgendering is the air that you’re breathing when you’re trans and trying to access perinatal health care,” Baltimore-based professional doula Moss Froom said.

Experts say putting gender-affirming, patient-specific language into practice is a key step to ensure that trans patients feel both seen and respected.

Making sure that intake paperwork and educational materials use inclusive language is an important start, as well as using that language in the exam room. But providing person-centered care goes beyond words — it requires letting go of assumptions, not pathologizing transness and being genuinely invested in patients themselves, Brown said.

“It’s the difference between memorizing someone’s pronouns or getting to know them the way that they see themselves and seeing them that way, too,” they said.

Despite being out as trans now, Jax has been misgendered by some of the same providers they and their partner have worked with over the course of their multi-year family building journey. They don’t think those doctors and nurses actually took the time to read their chart and note information like their pronouns. But those providers were the only local fertility practitioners.

Many trans and queer people turn to doulas to support them throughout their pregnancy experience. Kelsey Carroll, who founded the LGBTQ-focused organization Rainbow Doula DC in Washington, D.C., described doulas as coaches that support people through transitional experiences, like pregnancy, abortion, post-partum care, or non-pregnancy related events like post-operative care for those who have had gender-affirming surgery.

In pregnancy care, their role, in addition to physical work like using massage techniques that ease the pain of labor, is to act as a liaison between a parent and their providers to ensure they get the care that they need.

“It’s up to us to really do the homework and learn what the birthing person is hoping to gain out of their own experience, and then be the advocate in the room so that the person giving birth doesn’t have to worry about that,” Carroll said. It also takes that burden off of non-birthing partners.

“Our job is to care for [individuals] in the ways they’ve asked,” Brown said. “We’re not expecting them to disclose anything to us, we’re just creating a space for someone to be a whole person. … That kind of approach benefits everybody, not just queer and trans people.”

Brown practices “trauma-informed” care, which encourages medical providers to “meet individual needs in a compassionate way” and give patients the space to actively participate in their own care. For Jax, who said they’ve encountered more of that type of care during their current pregnancy than they did during their first, that’s meant providers actively communicating and asking for consent before touching parts of their body during examinations.

Froom pointed out that many trans people don’t have access to the type of perinatal health care options that they want and need. That access depends on a host of factors, including race, ability, socioeconomic status, health insurance coverage and geographic location. A patient in a rural setting, for example, may have fewer options compared to one in a city with a large LGBTQ population.

Thirty-three percent of respondents to the 2015 United States Transgender Survey reported avoiding seeking necessary medical care due to cost. Another 23 percent avoided care due to “fear of being mistreated as a transgender person.”

Venable-Novak noted that trans Black, Indigenous and other people of color face “very real disparities in health care” that are compounded by both their race and their gender identity.

“For so many people in our community, it’s not just their gender identity impacting the care that they’re getting, but it’s their race, their ability status, their immigration status, all of those facets,” Venable-Novak said. “People are human, so they’re not existing in a vacuum.”

They added that the national rhetoric surrounding a flood of transphobic legislation likely informs many people’s views on transgender people. “The world isn’t as loving to trans people as it needs to be in general.”

Ensuring better experiences for trans patients

Moving the medical world forward requires educating professionals in the particular physiological and psychological needs and concerns of trans and nonbinary patients. Too often, the patients end up doing that work themselves.

“Sometimes it takes the first person to push it all into motion, which is unfortunate for that first patient,” Venable-Novak said.

A third of respondents to the National Transgender Discrimination Survey who saw a health care provider in the previous year reported having at least one negative experience related to their trans identity, including “verbal harassment, refusal of treatment, or having to teach their provider about transgender people to receive appropriate care.”

Jax noted that some providers they met with have asked their advice on how to make the office’s paperwork and website gender inclusive, which to them signaled that they “were at least trying to put in an effort.” But they added that practitioners also need to understand that “not every trans person is the same,” so no two trans people will require identical care.

“They can understand [trans identity] in general, but we are still going to have to educate our providers about ‘Here’s my transness,’” they said.

While Jax was trying to get pregnant the second time, a fertility specialist suggested they begin taking estrogen and progesterone to increase their chances of conceiving. The specialist, Jax said, didn’t seem to understand why advice to take those hormones, which can have feminizing effects, was difficult for them to hear as a transmasculine person. Their eventual decision to take the hormones triggered feelings of gender dysphoria, which they addressed with their therapist.

Students in the medical field today may go through more training on transgender health care compared to a recent past where that information was nonexistent, but Venable-Novak said there’s still a long way to go when it comes to ensuring that all providers are competent about pregnancy in trans people.

That’s especially true for providers who finished school years or even decades ago, said Dr. Beth Cronin, an OB-GYN, LGBTQ health advocate and clinical associate professor of obstetrics and gynecology at Brown University.

“The education almost needs to be targeted to folks who are already done training and are out in practice and trying to make sure that their practices are inclusive and welcoming and affirming,” Cronin said.

She noted that the American College of Obstetricians and Gynecologists, the country’s leading professional association for the field, has made an effort to remove gendered language from many of its documents.

It’s also important for providers to be well versed in the fertility options for trans people — including being receptive to how they do or do not want to use their own reproductive material — as well as potential mental health concerns, like gender dysphoria, that could arise for a trans pregnant person, and how to get them the emotional support that they need.

Family Equality offers a virtual training program that trains professionals across the family-building field on LGBTQ+ competent care. The organization also hosts a directory of offices who have completed that training for those who are searching for providers.

Jax’s second pregnancy will be overseen by their primary care physician and an obstetrician who’s more familiar with trans identities — something that was harder to find when they had their first child. The couple is also considering hiring a doula, both for support and to take on the work of ensuring their gender identities are respected by any providers they work with. They’re optimistic that those changes will lead to better outcomes for them and their family.

“I’m hoping this journey is going to be a little bit better, and a lot more fulfilling,” they said.

By rahul