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A lot of parents start to worry as their children approach puberty. Amy Hamand has been dreading it for far longer.

Hamand’s 14-year-old daughter has severe autism, and limited verbal communication skills. Early on, Hamand knew her daughter likely wouldn’t be able to safely manage getting her period, or the mood changes and other side effects from menstruation.

Before her daughter got her period, Hamand took her to Dell Children’s adolescent health clinic in Austin. It was one of the most reassuring doctor’s visits Hamand had been to in a long time.

“I was just like, ‘What are we going to do? How is this going to work? Are we going to just have a mess everywhere all the time?’” Hamand recalls. “And we left that appointment, like, ‘We can do this. We’ve got doctors that can help us.’”

After trying different options, Hamand and the doctors eventually settled on using hormonal birth control to suppress her daughter’s period.

“She doesn’t have to bleed every month … [or] have the up and down that comes with having a cycle,” Hamand said. “She doesn’t have to struggle through all this on top of all the other things she already struggles with.”

Hamand felt like she and the doctors at Dell Children’s adolescent clinic were on the same team. So she was shocked when she heard the doctors who had cared for her family for almost five years were suddenly no longer employed by Dell Children’s.

Dell Children’s confirmed that none of the doctors from the adolescent health clinic are still employed there but declined to comment further on why they left. Their abrupt departure came soon after Attorney General Ken Paxton announced he was investigating the clinic for providing gender-affirming care to trans teenagers.

Gender-affirming care is the recommended treatment for gender dysphoria, the distress someone can feel when their gender identity does not match the sex they were assigned at birth.The Texas Legislature recently passed a bill that would prohibit minors from receiving certain gender-affirming medical treatments, like puberty blockers and hormone therapy, but it has not become law yet. It is expected to go into effect in September.

Patients who were receiving gender-affirming care at Dell Children’s are scrambling to find new providers, with many looking outside Texas. But gender-affirming care was only a small part of what this clinic provided, patients say. The doctors were renowned for their treatment of eating disorders and mental health issues, which are skyrocketing among adolescents. They also treated a wide range of menstrual disorders and helped families like Hamand’s navigate adolescence for young people with developmental disabilities.

All those families are now desperately looking for new doctors for their vulnerable children.

“Puberty has been rough, really, really rough,” Hamand said. “And to find out we have to start from scratch with finding providers that can help us is just heartbreaking.

“We know why we’re making the decisions we did, and to have somebody saying that they know what’s best for my family is just infuriating.”

Eating disorders

For Emme Shade-Shell 12th birthday, she asked for a Kitchen-Aid stand mixer to support her favorite hobby — cooking. Then the pandemic hit, her classes went online, and she spent all day looking at herself on a Zoom screen and scrolling social media.

A year later, she turned 13 inside a residential treatment facility for eating disorders.

“It was like a cult had taken over my kid,” said her mom, Randi Shade. “I couldn’t get her to eat. It was the most horrible thing.”

Their pediatrician told Shade that she had to take Emme to see Dr. Maria Monge at Dell Children’s adolescent health clinic.

“When you have a child with an eating disorder, you have to have a psychiatrist, you have to have a therapist, a dietician,” Shade said. “It’s a whole team, but Dr. Monge was our quarterback.”

Monge treated a wide range of adolescent health needs, but her speciality was treating eating disorders, which surged among teenagers during the pandemic. Monge did not respond to a request for comment.

The first time Emme met with Monge, the 13-year-old was just out of a residential treatment facility in Plano and wary of doctors telling her what to do. Right away, she said, Monge struck a different tone.

“With a lot of the doctors, they don’t want to listen to anything you have to say,” Emme said. “But she was never like that. She always wanted to hear what I had to say. … She validated me, and I felt like she really understood me.”

Shade and the whole team, led by Monge, got Emme back on track. She’s cooking again and living a normal teenager’s life. Emme attributes that to Monge helping her tackle not just her medical needs, but her emotional needs as well.

When Shade learned about Monge leaving the clinic, she was struck with deep grief for all the families who were just beginning the terrifying journey she and her family have taken in the last year.

Dell Children’s sent her a “transition of care” list of doctors for various specialties. Under the entry for eating disorder care, though, she noticed there were no other providers listed.

“I just can’t believe Dell Children’s would have this incredible resource, and then, poof, it’s just gone,” she said.

She is working on finding another doctor whom Emme connects with. If Monge sets up shop somewhere else, she said they’d be first in line.

“I don’t know if she’ll read this story,” Emme said, “but I want her to know that she was really good. She changed and helped a lot of people. And I don’t know every single doctor in the United States that works with adolescents with eating disorders, but I know she has to be the best.”

Menstrual disorders

For many families in the Austin area, Monge and her team had the answers they didn’t even know they needed as they dealt with unexpected complications of puberty and adolescence.

Dolina Logan Faulk was nervous about her daughter getting her first period, because she’d had difficult experiences with menstruation herself. But almost immediately, her daughter’s period was unlike anything she’d ever seen.

“It was like a biblical plague,” Logan Faulk said. “I couldn’t believe there was that much fluid in her body, and it just wouldn’t stop.”

Her 11-year-old daughter bled constantly for weeks while their pediatrician tried everything to stop it. Eventually, they sent the family to Dell Children’s adolescent health clinic.

There was more than a monthlong wait list at the time, but when they finally got in to see Dr. Mai-Anh Tran Ngoc, the doctor walked into the room in Hello Kitty tennis shoes with a whiteboard in hand.

“She’s just a fantastic human being,” Logan Faulk said. “She just drew us pictures and talked us through all of it, and was just so lovely and dear during the whole thing.”

They got her daughter on an intense regimen of hormonal birth control to try to stop the bleeding while they figured out what was going on. Logan Faulk said she had the nurses on speed dial, and they were in constant communication with the doctor.

And most important, the whole staff made sure her daughter didn’t feel any stigma or shame about what was happening with her body. Eventually, her daughter was diagnosed with a bleeding disorder called Von Willebrand disease, and they were able to figure out a treatment plan.

“I don’t know where we would be right now without them,” Logan Faulk said. “If this happened when my daughter was bleeding for five months, and there were suddenly no doctors, it kind of makes me cry a little bit to even think about.”

The sudden shakeup has thrust many families into immediate crisis mode. Hamand can hear the ticking clock: Her daughter has four months of birth control on hand, and then she’ll need to have another provider lined up to renew the prescription.

Dell Children’s referred her to their adolescent gynecology department, but with so many families looking for new doctors, she’s already worried about the waitlist. And that’s not even taking into account the relationship she’d cultivated with Tran and the whole staff.

“She was just so amazing,” Hamand said. “It was just easy. One thing about this was easy.”

She’s still waiting for more answers from Dell Children’s about what exactly led to this upheaval. And she’s disappointed to see the way these political debates are impacting the lives of Texans.

“I always thought the part about being more right-leaning is that the government stays out of your business,” she said. “That’s not at all what we’re doing anymore. It’s very much like, I know what’s best for your child.”

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