The 5-year-old child sat sullen before the birthday cake, refusing to blow out the candles. “Wishes don’t come true,” the child said. “I wish to be a boy and it’s not coming true.”

The child cried at the hairdresser’s because the cut wasn’t short enough and vomited at a kindergarten classmate’s girls-only party, pleading to go home.

At the start of second grade, his mother started letting him dress and appear as the boy the child insisted he was. That year, he got the lead in the school’s talent show. Watching his joy dancing and singing on stage, she vowed to do whatever she could to keep him happy, including seeking medical care to help him transition.

She first took him to Children’s Hospital of Philadelphia’s Gender and Sexuality Development Program when he was 7. Doctors waited until he was age 12 before discussing medications now under scrutiny by President Donald Trump’s administration to treat his gender dysphoria, a medical condition in which a person’s body does not match their gender identity.

Before prescribing any medication, CHOP required the mother and son to meet with therapists, social workers, and endocrinologists. He underwent medical exams, blood tests, bone scans, and psychosocial evaluations.

The results cleared the boy to start on a drug that blocked the start of puberty, intended to buy him time to explore his gender identity by pausing the development of female sex characteristics.

During the three years the boy was on puberty blockers, he signed up for basketball, made honor roll, and socialized with friends.

In June, the now 15-year-old high school sophomore started taking testosterone, a hormone that facilitates facial and body hair growth, voice deepening, and other changes that have helped his body to match his male identity.

At the time, the teen’s mother had no idea that CHOP had received that same month a federal subpoena demanding his medical records be turned over to the U.S. Department of Justice, along with those of hundreds of other children who have received gender-affirming care at the hospital’s nationally prominent clinic.

The South Jersey mother was one of 10 parents who spoke to The Inquirer about their children’s care there. The parents provided their names to a reporter, but asked to be identified only by their initials to protect their children’s privacy. All said they panicked after the subpoena came to the public’s attention last month through news reports.

They are now worried the federal government may “twist” the medical information that it has demanded from CHOP to politically target their children. The sweeping subpoena seeks their dates of birth, Social Security numbers, and addresses, as well as every communication by doctors — emails, Zoom recordings, voicemails, and encrypted text messages — dating back to January 2020.

“This is a scare tactic to stop doctors from providing this care. I don’t think my son would survive that,” said D.H., the South Jersey mother whose 15-year-old son just started taking testosterone. “He would suffer such pain, such psychic harm, if he was forced to de-transition and become someone he’s not.”

Federal lawyers are claiming the right to examine private patient records at CHOP and at least 19 other hospitals nationally to investigate possible health care fraud. A key investigative focus is looking into how doctors are prescribing puberty blockers and hormones “off-label,” meaning for a condition not specifically approved by the U.S. Food and Drug Administration.

Once a drug is approved by the FDA, it is legal for doctors to prescribe it to treat other conditions that could benefit from the medication. Off-label prescribing is a common and widely accepted medical practice, especially in pediatrics.

The American Academy of Pediatrics and other major medical associations, citing research, have maintained that using these medications to provide gender-affirming care for minors is safe, effective, and medically necessary for their mental health.

Yet Trump’s administration says doctors who prescribe commonly used medications, known as puberty blockers and hormones, to patients under age 20 are engaging in chemical mutilation, likening it to child abuse. Teenagers are not mature enough to make such major decisions, the administration has argued.

CHOP has asked a federal judge to limit the subpoena’s scope to protect patient privacy, mounting a legal battle with national stakes now playing out in U.S. District Court in Philadelphia. Lawyers for both sides met with Judge Mark A. Kearney earlier this week by conference call.

A DOJ lawyer told Kearney that some other hospitals have already complied with the subpoena, though they did not say which ones.

The DOJ and CHOP did not respond to a request for comment about the subpoena.

Late last month, CHOP emailed parents to assure them it has not complied with the subpoena’s request for “patient information and records” and takes its patients’ “privacy extremely seriously.”

“My most potent feeling is fury,” said another parent, S.C., a Philadelphia mother of a 15-year-old transgender son. “I’m also afraid.”

‘Darkest fears’

Since learning of the subpoena, CHOP parents said, they have taken to messaging apps to share their “darkest fears.”

Parents said they are panicked that the court will order CHOP to comply with the subpoena, and that federal prosecutors ultimately will make a criminal case against doctors — and perhaps parents.

Some parents said they are afraid their children will be taken from them and placed on a national registry of transgender youth, comparing the doomsday scenario to Nazi Germany.

“I would like to be able to say, ‘It’s not going to happen,’ but there’s been a lot of things over the past seven months that we said, ‘It’s not going to happen,’” said C.K., a South Jersey mother of a 21-year-old transgender daughter who became a CHOP patient at age 14.

Most parents said they are fearful that CHOP, like other institutions, will be bullied into closing its gender-affirming care program. Other hospitals in the Philadelphia region and nationally, including Penn Medicine and Nemours Children’s Hospital, have limited such care in recent months out of fear of financial and legal reprisals from the Trump administration.

Some families also worry that Pennsylvania will join more than two dozen states that have passed laws prohibiting all or most gender treatment of minors. The U.S. Supreme Court upheld the legality of such restrictions, ruling in June that Tennessee’s ban did not violate the Constitution.

Parents said stopping care for their children is not an option because prior to treatment, they were depressed, anxious, and, in some cases, suicidal.

One parent, H.C.H., said her 17-year-old transgender daughter was 16 when she told her family she no longer wanted to live. “She actually told us she wished she wasn’t transgender because it’s so hard and she couldn’t see any way of living not as a woman, not as herself,” H.C.H. said.

Her daughter started taking the hormone estrogen in June. Although she has yet to see any physical effects, she is more confident and content. Her mother and father are now bracing for the possibility that the U.S. will curtail gender-affirming care for minors. They are exploring how to stockpile enough estrogen to last until their daughter is 20.

If all else fails, the mother said, she works for a company with offices in Canada, and they will move.

A South Jersey father, D.L., said his 18-year-old son also thought “about ending his life pretty much every day” prior to receiving care at CHOP.

His son had changed his name on his birth certificate when he was 15. The gender on his driver’s license says male. The father said he believes the DOJ subpoena seeks Social Security numbers as part of a witch hunt to identify transgender youth.

“It’s not about protecting the kids,” he said. “It’s about taking away the rights of people who you don’t want to exist.”

‘His whole soul’

CHOP doctors and families said they are worried about the highly personal details that could be divulged to the government from doctor-patient conversations they thought were confidential.

A Philadelphia-area mother, A.G., said her now-23-year-old transgender son’s medical records will reveal that he was institutionalized for suicidal thoughts at age 17 and refused to shower as a young child because he was horrified by his body.

“It’s his whole soul,” she said.

The 1996 Health Insurance Portability and Accountability Act, known as HIPAA, established federal standards for protecting private health information. It prevents providers and insurers from sharing patient information without their consent, but allows disclosures related to subpoenas.

The subpoena received by CHOP seeks documents related to how doctors make decisions in prescribing puberty blockers and hormones. The DOJ is asking for information about “parent or guardian authorization for minor patients,” and disclosures about “off-label use” or “potential risks” of giving youth those medications.

Off-label uses have not been deemed unsafe by the FDA. Rather, they were simply not reviewed for the exact use a doctor has decided to prescribe them for.

In many cases, preliminary clinical trials show a new drug could benefit many types of patients. But because the FDA approval process is so rigorous, drugmakers typically seek approval for treating one specific condition. They may later apply for wider uses.

At least a quarter of drugs in the U.S. are prescribed off-label, researchers estimate, with higher rates in cancer care and pediatrics. That’s because the gold standard of medical research — a clinical trial in which some patients unknowingly receive a placebo instead of medication — is not considered ethical among children or critically ill patients.

The medications commonly given to block puberty, such as Lupron and Zoladex, are FDA-approved to treat a condition known as central precocious puberty, which is when children show signs of puberty at an abnormally early age. The drugs’ effects are reversible; puberty will resume if medications are stopped.

Leading medical associations consider this off-label use to treat gender dysphoria safe, because the drugs have already been tested among youth and are being used for the same purpose as their FDA-approved intent. The difference is patients’ motivation for suppressing puberty.

C.K., a South Jersey mother, said for years she could not figure out why her child, now a young woman, was so unhappy, anxious, and prone to severe meltdowns. She finally took her child to a psychiatrist, who diagnosed gender dysphoria. She sought CHOP’s help when her daughter was 14.

She rejected as “absurd” Trump’s comparison of gender-affirming medical care to abuse.

“All we’ve ever tried to do is what we needed to do for my child to be a happy person,” she said. “I could see the federal government trying to get all your personal information if you are a terrorist, but these are people who are just trying to live their everyday lives, just like everybody else.”

A.A., a Philadelphia mother of a 12-year-old transgender daughter, said if DOJ wins its subpoena request, everyone should be worried about their own medical privacy.

“Once they set that precedent, they can go after you then,” she said.

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