The doctors at Ontario Hospital were silent. Eric knew that the situation was more serious than confusion.
"At that moment, I somehow looked around and saw what I would call a panic on all faces of the medical staff," Eric said.
They had expected her baby Rosie to be a girl, but her parents saw that it was a penis. Eric recalled that he had learned to do a PhD on babies with genitalia who were not typically male or female. He immediately realized that Rosie was like these babies.
"I wanted the baby to be put on the chest right away because I just had it, and I worked really hard right now, and they did not do it," Stephani said, reminding me of that day in 2012. "And I was scared . "
The doctors covered her with a blanket and brought her around the room for a long time, Eric said. When they returned, they offered what they knew: Rosie had atypical genitalia, and more tests were needed to determine if she was genetically a girl or a boy and if she had a serious medical condition, said Eric, the doctors told them.
"It was basically very solemn, very exciting and very scary," said Eric.
The next few days were filled with extensive tests and examinations until the doctors were finally able to make a diagnosis. Rosie had two X chromosomes and was considered female, they said, but she had congenital adrenal hyperplasia that was wasting salt, a severe form of a condition known as CAH. People with CAH lack an enzyme that the adrenal glands need to produce cortisol. Rosie's body can not hold back enough sodium.
The adrenals also produce the original ingredients of sex hormones. When the brain receives signals that the cortisol level is low, the adrenals must work harder. This leads to a higher production of sex hormone components, resulting in an excess of male hormones. These hormones cause the formation of atypical genitalia in fetuses with two X chromosomes while they are in utero.
Rosie's condition is classified by many physicians as DSD or differences or disorders of sex development. Some patients and parents of patients – including Eric and Stephani – do not like this rating. They prefer the term intersex.
Many conditions under the DSD / intersex roof could lead to a variety of different sexual characteristics in individuals, such as an enlarged clitoris or a micropenis.
Atypical genitalia do not always occur in patients with CAH, but when it does, doctors sometimes encourage plastic surgery.
Eric remembered learning about these events as a student, and he was skeptical.
Stephani stayed in the hospital with Rosie, who was still under surveillance, and began to examine the operations. Eric did the same at home. They became familiar with the list of possible long-term risks, such as chronic pain, the inability to orgasm, or the eventual refusal to sex. If the doctors suggested an operation, Eric wanted to say no. Stephani had not even expected it to come.
"My idea, because I was very naive, was that they would never recommend anything that was not necessary at the moment," Stephani said. "For example, they would not put a tiny baby under the knife for no good reason – can you imagine a world where they're just doing cosmetic surgery on babies? I can not imagine that it exists."
A "simple" solution
The surgical approach to CAH and other DSD / intersex disorders began in the 1960s when doctors found ways to perform surgery that alleviated some of their parents' fears about their babies. The surgery was designed to help patients adapt more to the mainstream characteristics of one sex or the other. But sometimes the results of these surgeries did not match the gender identities of the patients.
Over the years, some who had these surgeries felt a wrong relationship between their gender and their gender, or felt that the surgery had mutilated them because their genitals lacked the sexual sensation. This led to a wave of activism called the Intersex Rights Movement. The people spoke out and protested against medically unnecessary surgery on children.
Nowadays, these surgeries are considered to be cosmetic procedures rather than emergency treatments, but they are still being performed.
There is also a legislative pushback from the intersex community, most recently through a California bill (SB 201).
The law would prohibit physicians from carrying out operations on minors with atypical genitalia, unless the procedures are classified as "medically necessary" or the child can provide prior consent. It is sponsored by the Democratic Senator Scott Wiener from San Francisco.
The California Medical Association formally opposed the law and sent a letter of protest to the Senate Committee on the Economy, Professions, and Economic Development of the State.
"The bill makes an exception to any medically considered necessary procedure or treatment that is defined as being inadequate to address the complexity of DSD cases and potentially jeopardizing the patient's physical and emotional health and future," he said Letter indicated.
About 1 in 2,000 babies are born with genitalia that are so different that, according to the report, doctors may recommend surgery.
Devore was born in 1958 with hypospadias, a condition in which the urethra is located not on the tip but on the underside of the penis. He had over 25 operations, many as a child. He describes them as painful and unnecessary.
"There are people who grew up with these operations very early on, they make it very clear to the medical community that these surgeries are not working, we do not like the results, they should not have happened to us as children," said Devore. "It's our genitals, and we want to grow up with our own genitals, not the genitals our doctors thought right, not the genitals our parents thought were right, it's our body."
Surgeries are usually performed to treat the parents' anxiety, which does not do the infant justice, he said.
The idea is that children will have a better life because their genitals look normal, but that's often not the case, he said.
"When you perform a plastic surgery on the genitals, you magically do not get normal male or female genitalia, and we get intersex genitals that have undergone plastic surgery," he said.
The parents' decision to vote depends heavily on their education in this area, he said.
"Taking a little time to do some research can change the child's future," he said.
Feel the pressure
Three days after Rosie's birth, Eric and Stephani were invited to a meeting with specialists to discuss the steps. You remember going to a room with more than a dozen medical staff: pediatric gynecologists, geneticists, pediatric urologists, endocrinologists and a social worker.
"It was probably the most intimidating room I've ever been to," Eric said.
Rosie's parents said a pediatric urologist offered them only two options: they could shrink Rosie's clitoris and create a vaginal canal or perform the vaginal canal surgery by herself.
He recommended that Rosie perform both interventions at the age of about 6 months, preferably not much later. The argument was that the younger Rosie was, the faster she would heal, and she did not have to experience that she looked physically different from other children.
After a thorough search, Rosie's parents knew they did not want any of the procedures.
To their dismay, they were never offered the option of surgery, Eric said. And when he spoke to him, the doctor said that this was a choice he would not recommend, since Rosie could possibly suffer a psychological trauma because she did not look like other girls.
The rest of the staff remained silent, Stephani said.
"It would have been nice to think that we had an ally, but we do not have that," Stephani said.
The doctor's feeling was that if Rosie looked normal, she would feel better. Eric and Stephani felt it was not wrong to look different, and if there was an operation, Rosie would have made the choice in the matter. They remained relentless to disagree with the operations.
Meanwhile, the couple was recommended by the social workers to be cautious when explaining Rosie's condition to other people, including her older brother and older sister.
David Sandberg, a psychologist at the University of Michigan who provides clinical services to children with DSD / intersex diseases and their families, said his first step in dealing with families with a newborn who has one of these conditions is to help them To find the best way to share information with people they trust.
"History does not have to be all the details, but there should not be anything that could be considered a lie in retrospect," said Sandberg, who was not involved in Rosie's care. "It could be an incomplete story, it could be less technical, but it has to be based on the truth, once you've taken the path of a non-truth, it's very difficult to get rid of it."
The Lohmans continued to feel pressured by their pediatric urologist to consider surgery, even as Rosie approached her first birthday. After dropping his foot and saying that they would not agree, Eric waved her off to the same pediatric urologist, Eric said, as if saying that they would be back in a few years. (The pediatric neurologist declined to comment on this story.)
It's been years since this appointment, and they still have not returned.
According to the American Academy of Pediatrics, the guidelines for atypical genitalia are being reviewed.
"The American Academy of Pediatrics agrees that it is important for a child's medical team and parents to have open, transparent discussions so parents can understand their child's condition, the risks and benefits of proposed treatment, and alternatives such as moving fully understand the operation. "The organization said in a statement.
Dr. Veronica Gomez-Lobo, director of pediatric gynecology at the Children's National Medical Center in Washington, said she agreed with the statement of the American Academy of Pediatrics and the other objectives, "to make children happy and healthy To enable life. " "
Gomez-Lobo has worked with many families in the PROUD Clinic, which provides specialized diagnostic, assessment and treatment services for children with complex diseases, including those that lead to atypical genitalia. When a baby is born with one of these conditions, the first priority in the clinic is that the parents can build a relationship with their child, she said.
"We do not even have to see these kids until they connect with their parents, so they will not be judged until about a month after their birth," she said.
For patients with CAH, the staff at the clinic first make sure that all medical needs are addressed and treated, said Gomez-Lobo. With this done, they tell parents about the benefits and risks of genital surgery, and they now mention the Human Rights Watch report, she said.
"We do not know if it makes sense to make a clitoris smaller," she said. "Whether this causes the child to grow up with a better self-image or something, no one has judged that, but there is some literature suggesting that clitoral surgeries may decrease sensation and depend on how it is done and many different reason. "
Out in the open
After the diagnosis of Rosie the Lohmans spent a lot of time at home and were only open to Rosie's condition for the family.
"Pretty soon I felt like that was wrong," Stephani said.
When they started to get nervous because they hired babysitters to change Rosie's diapers, they decided to share the secret.
"I was like," That's ridiculous. That just makes it shameful. Sometimes I do not feel we are doing her a favor, "Stephani said." We had the idea that we contribute to this culture of shame. We perpetuate what we are trying to avoid. "
Rosie was 18 months old when she stopped concealing her condition and spoke openly with friends and others outside the family, Stephani said. At the age of 4, Rosie was featured in the documentary "Gender Revolution: A Journey with Katie Couric," which is now available at Netflix.
The family now lives in Milwaukee. Eric is a member of the board of directors of interACT, an organization dedicated to improving the visibility of intersex children and promoting laws that protect intersex adolescents from surgery.
They recently took Rosie to a protest at Lurie Children's Hospital in Chicago, where they called for the facility to end the practice of medically unnecessary infant genital surgery. In July, Eric and Stephani published a book about their experiences with raising an intersex child, Raising Rosie.
In August, Eric flew to California to testify before the state health committee and opted for a resolution condemning unnecessary surgery on children with intersex conditions. Weeks later, the resolution passed and California was the first state to denounce such operations. The resolution was introduced by Wiener, who sponsored the law, which would ban some of these operations.
It was the toughest decision for the Lohmans to show Rosie as an intersex public, Eric said. Eric and Stephani have written a letter for Rosie, in which they read when she is old enough, and explained how they had decided to talk about their condition. They hope she will understand. Until then, they focus on making them feel as comfortable as possible with their bodies. As she gets older, they plan to prepare for how to deal with their peers and when they want to be private.
"When the time comes and we like 'OK, now she will sleep,' we say, 'Well, we want you to know that this is your body, and you should feel comfortable talking about it. and you do not have to show your body to anyone, but there's nothing to be ashamed of, "Eric said.
The risks of surgery on a child with different sexual development are known, said the University of Michigan's Sandberg, but the risks of avoiding surgeries – which are still rare – are not clear. When faced with a family that wants to operate on their newborn with atypical genitalia, or a family that is stubbornly against it, he warns them of the risks that can arise from both decisions. Since there is very little published evidence of how children who are not undergoing surgery grow up, they can only speculate.
"Being different somehow does not hurt you, but it's not an advantage," Sandberg said. "And so you have to know about the factors that make a child more vulnerable, because it's rejected or neglected by peers, and these are things that would, in a gradual, developmental way, I would tell some families, but me If I have any value for the family, it gets involved in a discussion that continues over time as the child gets older, then over time the child becomes involved in these conversations entangle. "
On the other hand, Devore, the clinical psychologist in Las Vegas, said that he believes that there should be only one approach to helping parents who have a child with one of these conditions.
"We firmly believe that people who are Obgyns and other babies are to be learned:" They gave birth to a healthy intersex child. Not just a male child. Not just a female child. Or a child has problems. You gave birth to a healthy, intersex child, "he said." One day, the child may choose surgery or not. But the hospital will offer genetic counseling, neurological counseling, and psychological counseling so that your family can face this challenge in a healthy way and give guidance to your child understand their difference. & # 39; "
Devore expects younger generations, as well as younger physicians, to be more open to intersex conditions and the variability of expression. The changing environment can be seen in the universities, in the media and on Facebook, he said.
Intersex is a viable identity that should not be considered unhealthy, he said. Equally important, however, is that individuals with atypical genitalia have the right not to be defined by it.
"When people have a feeling for themselves or feel like a woman, no matter what their genitals look like, they can identify with it," he said. "And that's the most fundamental point we could have highlighted, it's the individual's right to decide how he wants to decide, it's not the parent's right, it's not the doctor's or surgeon's right."
Rosie is now 6 years old and has never had a genital operation. She has big green eyes and blond hair, which she prefers to keep short. Clothes are among her favorite pieces. Her parents describe her as "unflinching" and "courageous".
"She wants a Mohawk," Eric said. "We try to tell her that in Wisconsin it's impractical to have a Mohawk because you have to wear a winter hat, but she wants short hair, so she has it."
"Rosie is awesome, she's a firecracker," Stephani said.
You have told Rosie that her body is different from others, but that many people have different bodies. "And that's fine," Eric said.
If Rosie ever expressed a desire to reduce the clitoris, Eric said they would start the process by having her talk to a therapist, an intersexed person who has undergone surgery, and an intersexed person who has not undergone surgery.
"If that happens in a year, we'll start it in a year, and if it's 16, we'll do it," he said.
You would urgently ask her to wait until she is at least a teenager and experienced sexual pleasure because the process may affect sexual sensations.
Rosie has taken medication for CAH since she was a baby. She now takes three tablets a day to balance her cortisol and electrolyte levels. The pills swallowed at 7:30, 15:30. and 10:30 prevent her from getting into adrenal crisis.
With this medical routine, Rosie's health is stabilized. She begins to learn how to take care of her condition on her own and carries rescue equipment if she gets into an adrenocortical crisis. However, her parents are still worried about the future. Eric said illness and hospitalization were inevitable, and he was nervous about the quality of her health care when she was older and the possibility that schools and workplaces would be relentless because she needed to take time off.
Although Rosie was raised as a girl, it is important for her parents to refer to them as intersex and to promote gender equality. In other words, they do not limit their gender expression to that of a boy or a girl.
Since Rosie identifies herself as a girl, her parents mark "woman" in the category "gender" when filling in forms. She is in first grade this year and has developed a group of core friends. She uses the girl's bathroom and has to take care of her body with other students. However, they are confident that they either do not care or laugh with their type of personality when someone points out their differences.
Their teachers are aware of their condition and are merciful, he said. Parents in their community have also accepted.
"At the moment it is very stable and we have a very supportive network," Eric said. "It's almost as if nobody cares about her in the intersex area."