In response to a growing patient population, the newly-established Washington University Transgender Center at St. Louis Children’s Hospital provides care to kids and adolescents who identify as a gender different from the sex they were assigned at birth.
Listen in as Christopher Lewis, MD, & Sarah Garwood, MD discuss the cultural shift that has catapulted the need for these services.
Washington University Transgender Center at St. Louis Children’s Hospital
Featured Speaker:
Learn more about Christopher Lewis, MD
Sarah Garwood, MD, is a Washington University adolescent medicine physician at St. Louis Children’s Hospital.
Learn more about Sarah Garwood, MD
Christopher Lewis, MD, & Sarah Garwood, MD
Christopher Lewis, MD, is a Washington University pediatric endocrinologist and Transgender Center director.Learn more about Christopher Lewis, MD
Sarah Garwood, MD, is a Washington University adolescent medicine physician at St. Louis Children’s Hospital.
Learn more about Sarah Garwood, MD
Transcription:
Melanie Cole (Host): In response to a growing patient population, the newly established Washington University Transgender Center, at St Louis Children’s Hospital provides care to kids and adolescents, who identify as gender different from the sex they were assigned at birth. My guests today are Dr. Christopher Lewis, he’s a Washington University Pediatric Endocrinologist and Transgender Center Director at St Louis Children’s Hospital. And Dr. Sarah Garwood, she’s a Washington University adolescent medicine physician at St Louis Children’s Hospital. Welcome to the show Doctors. So, Dr. Lewis I’ll start with you. Explain a little bit about how transgender care has been treated in the past in this country and what do you see as the changing tide.
Dr. Christopher Lewis, MD (Guest): Well, transgender medicine really had its start not too terribly long ago when we adopted sort of the protocols that they follow and the Netherlands. And since then, in the early 2000s, we have made some changes and had some adjustments to where now the Pediatric Endo… or the Endocrine Society has its own set of guidelines. As well as the W path, which is the Washington or the World Professional Association of Transgender Health. And there has been, in the past, little research that has been done to see if these guidelines are well established. And we’ve been making strides into having the therapies that we provide, and the service that we offer actually show that they do have significant impact on medical and psycho-social outcome. That do show that the things that we provide for this patient population does actually improve their overall quality of life.
In terms of Washington University, we started seeing our first transgender patient and providing hormonal care, probably around 2008 or 2009, and it had been just a few patients at first, and over the past couple of years, our numbers have continued to grow exponentially, to where last year we had a total of 74 patients seen just in the span of 2016, to the year prior to that had been 40, 30. So, it’s definitely growing in numbers and we anticipate that growth to continue on for the next several years, especially now that we’re opening up a dedicated, multi-disciplinary clinic.
Melanie: And Dr. Garwood, discuss the cultural shift that’s catapulted the need for these types of services.
Dr. Sarah Garwood, GD (Guest): Well, I think that parents today, probably parent a bit differently, in that they open conversations with their children. They allow a little more discussion about things like identity. We’ve seen growing acceptance for lesbian, gay, bisexual people, with legalization of gay marriage in the past few years, and there’s been a general cultural zest of being more tolerant and accepting of people of different sexualities and gender identities. And I think this, the primary reason why we’re seeing so many more referrals to gender centers, I don’t think that this is something that’s becoming more common per say.
We know that for centuries, transgender people have existed in cultures and in societies, and many cultures and societies have actually accepted and welcomed people of gender variance. So, I think it’s more that, this is something that’s become easier to talk about and therefore we’re seeing more people kind of coming forward, bringing their kids in for evaluation.
Melanie: Dr. Garwood, I’m going to stick with you for a minute. When does it become apparent to a parent or to the healthcare provider that a child maybe transgender or going through some emotional issues, where they’re not quite sure what to tell an adult or their caregiver?
Dr. Garwood: We believe that a child starts to form their gender understanding in the young pre-school years, but it follows a different path for different children. So, some children begin to express a transgender sentiment in young childhood, so the three and four-year-old to insistently and persistently state that they are a different gender than their biological sex. So, that happens in some cases. In some cases, people may have kind of been more a little gender a-typical or has been behaviors or activities, that weren’t sort of stereotypical of their birth sex, but really it comes out more in their adolescent period of development when they enter puberty.
And as an Adolescent Medicine Physician, that’s frequently the time that I see patients, as they’re entering puberty, and this feeling that they had about their gender really, really is highlighted by those pubertal changes that make that dysphoria or that discrepancy so painful and so difficult. And at that time of development is when we might see kids who even contemplate suicide, or will harm themselves or turn to drugs or alcohol because that internal pain is so significant. Is there a not these developments.
So, there is not just one path as we know from more famous cases recently. Some people even come out or kind of come to a full understanding of their gender identity even at adulthood or even late adulthood. So, there’s not sort of a cookie cutter pattern that we see, but sort of classic things or more common things might be that adolescent age group, as I said, although, we have younger kids also expressing those feelings. What we know in general, is that if someone reaches pubertal developmental stage and they are still persistently expressing a transgender identity, nearly all of those people will continue to have a transgender identity into adulthood.
There are some young children, who in preschool, early school years, may have some cross-gender identity or play or things that like that. Some of those kids will end up accepting their biologic sex, but if you reach that pubertal stage of the development and you begin puberty, and you’re still proclaiming a transgender identity, it is highly unlikely that that’s going to change.
Melanie: And Dr. Lewis, how is individualized care established as we’ve just spoken about the ideal age at which patients should be seen as being crucial to their emotional wellbeing, as Dr. Garwood has just said. How do you individualize that care, whether they’re a younger child or an adolescent, as being crucial to that emotional strength that they need to deal with this as they grow older?
Dr. Lewis: Well, as Dr. Garwood was saying, we do not have a cookie cutter approach, so even if the same age and gender identity comes to us, they may have different desires and expectations. When someone comes as a pre-pubertal patient, it’s mostly support and gender affirming approach to make sure that we do not affect… the child has normal psycho-social development, and has not fallen to that path that Dr. Garwood was talking about of depression, and anxiety, and suicidality.
One they have started puberty, we can consider doing something called pubertal blockers, which is hormone that stops puberty and is fully reversible, if we were to take the… stop administering the hormone and it stops their puberty and prevents other pubertal progression that could potentially worsen gender dysphoria, worsen issues related to depression, anxiety. And it also would prevent the development of secondary sexual characteristics, that in the future may be more difficult to erase or to mitigate.
For patients that come to us older, or when we have patients who have been following and have been on blockers and they’re ready to transition to using gender affirming hormones, or what people most know as cross-sex or cross-gender hormones. That is when we can start having the discussions about giving testosterone and or estrogen. Not every patient that comes to us wants hormonal intervention, not every patient that comes to us needs surgical intervention. We sort of give the approach of what is all the options available to a patient, and in conjunction with the patient and their family, we make a decision after discussing the benefits and risk and complications and costs, and everything else about the therapies. What would you use the best route to go for that patient? So, we do not have a particular pathway that says, “Oh, you have now reached this stage of puberty. You have to start this dose of this medication and that’s that.” It’s a group decision and a collaborative effort, to make sure that we do what’s best for the patient.
Melanie: Dr. Garwood, discuss the multi-disciplinary aspect of the clinic and what other services are incorporated into it.
Dr. Garwood: Well, I think the partnership of pediatric endocrinology and adolescent medicine can begin with, in the formation of this clinic is unique and also going to be very beneficial for kids as we talked about that comorbidity that we can see with mental health concerns, such as depression and anxiety. Being able to work closely together from both the Endocrine management as well as the mental health management will be really helpful for teens.
We also will include support from social work, so someone who can help families access resources such as, social support for both parents and for their kids. In some cases, help provide resources for schools, teachers and educators and principals are also working with transgender students to make the environment supportive for them and to help make accommodations as necessary. So, providing schools in the region with access to educational resources will be really important.
We hope to have nurse coordination, so that if you’re insurance does not support the recommended treatment, we have people who can help with filing appeals with insurance companies or help coach parents through that process, to try to get access to treatment in a more efficient way. And then we will work closely with community mental health providers and our St Louis Children’s Hospital psychology department, to help provide mental health support also. In some cases, to help a child explore their understanding of their gender identity or sexual orientation, and in some cases, to help support readiness for transition and adjustment to transition because those are also developmental processes for adolescents, as they’re going through the transition process. So, to help with the mental health support and that adjustment, and to help support the families during that time, too.
Dr. Lewis: I would like to add that, in addition to the services that are… that could be available in clinic, we also are having discussions with various divisions within Washington University to provide other aspects for care. So, psychology and psychiatry to assist with mental health efforts, reproductive endocrinology to provide guidance and fertility preservation, gynecology to provide cervical, vaginal, uterine and ovarian health. Speech therapy, to help patients achieve the tonality and phonation that they want with their voice. Dermatology, to help with things like acne, hair loss, changes in skin that may want to be affected, as well as plastic and urology. Plastic surgery and urologic surgery, to help with top surgery and bottom surgery.
Melanie: Dr. Garwood, you mentioned earlier about parents and help with some of the billing. What does the clinic in support for parents as well because while this is about the child and you are working with this child. The parents are going through their own bit of emotional insecurity, they’re not sure what their supposed to, in terms of support, and their own mental health, and do you help them with this?
Dr. Garwood: Well, I think the first thing we can offer is an evidence-based educational background for parents, so that they know that they’re not alone and that there are services that can be provided to their children that can help alleviate the pain, discomfort, distrust. That they’ve seen their child experience. So, I think we offer education and also hope that this can get better, and that we can support their child and their family through this process, so that we can work with them and walk with them along this path and in this journey. Then we also are really intentionally creating a network of community therapists for both kids and for parents to help with mental health support, and then I have to say a huge support for parents in this community is an organization called Transparent, which is a parent support group for parents of transgender kids and we regularly connect families to that network as they weren’t aware of those services, and that continues to be a really important support for the parents and families of kids.
I think, as doctors we can give a lot of information, a lot of education, but nothing can really, I think, speak to the heart of a parent like a peer who’s going through the same thing or who has been through that journey five years, and can tell them, “I was there, I know how you’re feeling, but here’s where we are now and life is great. And my child is happy and thriving.” And that I think is a real gift.
Melanie: In summary, Dr. Lewis, please tell other physicians what you’d like them to know about Washington University Transgender Center at St Louis Children’s Hospital, and when a child should be referred to the center.
Dr. Lewis: So, our mission is really to provide comprehensive care to all gender variant children in adolescence, to ensure that they grow and develop as healthy individuals of able to take their rightful place in our society in a helpful way. We plan to develop individual care plans that meet each patient’s medical and emotional needs, as well as their families for information and support as Dr. Garwood was just now saying. And also, to help connect them to community-based peer academic advocacy and legal resources. What we would like for someone to do if they’re interested in referring their patient is to contact our division of pediatric endocrinology which is, 3144546051, to establish care and referral for our gender center. We’re seeing patients up till 21 years of age for new referrals, for patients that we already have established care, we will see probably close through to 24 years, and we will also help coordinate transition to adult providers and any other resources that they may need.
Melanie: And Dr. Garwood, last word to you. What can a pediatrician expect from your team after referral and so far as communication with the referring physician and your team approach, kind of wrap it all up for us.
Dr. Garwood: So, every patient seen in the Gender Center will have a comprehensive evaluation by Dr. Lewis or myself and our recommendations will be clearly made, and all pediatricians will have, either a dictated letter or note sent to them or copied to them through our electronic records system. We’re also available for ongoing consultation by phone, questions about their child that they referred to us, and other support that we can offer, either through Dr. Lewis, myself or through our multi-disciplinary support staff that will be working with us. [INAUDIBLE 00:16:08]
Melanie: Thank you both so much for being with us today. A physician can refer a patient by calling Children’s Direct Physician Access Line at, 1800678HELP, that’s 18006784357. You’re listening to Radio Rounds with St Lewis Children’s Hospital. For more information on resources available at St Louis Children’s Hospital, you can go to, StLouisChildrens.org, that’s StLouisChildrens.org. This is Melanie Cole, thanks so much for listening.
Melanie Cole (Host): In response to a growing patient population, the newly established Washington University Transgender Center, at St Louis Children’s Hospital provides care to kids and adolescents, who identify as gender different from the sex they were assigned at birth. My guests today are Dr. Christopher Lewis, he’s a Washington University Pediatric Endocrinologist and Transgender Center Director at St Louis Children’s Hospital. And Dr. Sarah Garwood, she’s a Washington University adolescent medicine physician at St Louis Children’s Hospital. Welcome to the show Doctors. So, Dr. Lewis I’ll start with you. Explain a little bit about how transgender care has been treated in the past in this country and what do you see as the changing tide.
Dr. Christopher Lewis, MD (Guest): Well, transgender medicine really had its start not too terribly long ago when we adopted sort of the protocols that they follow and the Netherlands. And since then, in the early 2000s, we have made some changes and had some adjustments to where now the Pediatric Endo… or the Endocrine Society has its own set of guidelines. As well as the W path, which is the Washington or the World Professional Association of Transgender Health. And there has been, in the past, little research that has been done to see if these guidelines are well established. And we’ve been making strides into having the therapies that we provide, and the service that we offer actually show that they do have significant impact on medical and psycho-social outcome. That do show that the things that we provide for this patient population does actually improve their overall quality of life.
In terms of Washington University, we started seeing our first transgender patient and providing hormonal care, probably around 2008 or 2009, and it had been just a few patients at first, and over the past couple of years, our numbers have continued to grow exponentially, to where last year we had a total of 74 patients seen just in the span of 2016, to the year prior to that had been 40, 30. So, it’s definitely growing in numbers and we anticipate that growth to continue on for the next several years, especially now that we’re opening up a dedicated, multi-disciplinary clinic.
Melanie: And Dr. Garwood, discuss the cultural shift that’s catapulted the need for these types of services.
Dr. Sarah Garwood, GD (Guest): Well, I think that parents today, probably parent a bit differently, in that they open conversations with their children. They allow a little more discussion about things like identity. We’ve seen growing acceptance for lesbian, gay, bisexual people, with legalization of gay marriage in the past few years, and there’s been a general cultural zest of being more tolerant and accepting of people of different sexualities and gender identities. And I think this, the primary reason why we’re seeing so many more referrals to gender centers, I don’t think that this is something that’s becoming more common per say.
We know that for centuries, transgender people have existed in cultures and in societies, and many cultures and societies have actually accepted and welcomed people of gender variance. So, I think it’s more that, this is something that’s become easier to talk about and therefore we’re seeing more people kind of coming forward, bringing their kids in for evaluation.
Melanie: Dr. Garwood, I’m going to stick with you for a minute. When does it become apparent to a parent or to the healthcare provider that a child maybe transgender or going through some emotional issues, where they’re not quite sure what to tell an adult or their caregiver?
Dr. Garwood: We believe that a child starts to form their gender understanding in the young pre-school years, but it follows a different path for different children. So, some children begin to express a transgender sentiment in young childhood, so the three and four-year-old to insistently and persistently state that they are a different gender than their biological sex. So, that happens in some cases. In some cases, people may have kind of been more a little gender a-typical or has been behaviors or activities, that weren’t sort of stereotypical of their birth sex, but really it comes out more in their adolescent period of development when they enter puberty.
And as an Adolescent Medicine Physician, that’s frequently the time that I see patients, as they’re entering puberty, and this feeling that they had about their gender really, really is highlighted by those pubertal changes that make that dysphoria or that discrepancy so painful and so difficult. And at that time of development is when we might see kids who even contemplate suicide, or will harm themselves or turn to drugs or alcohol because that internal pain is so significant. Is there a not these developments.
So, there is not just one path as we know from more famous cases recently. Some people even come out or kind of come to a full understanding of their gender identity even at adulthood or even late adulthood. So, there’s not sort of a cookie cutter pattern that we see, but sort of classic things or more common things might be that adolescent age group, as I said, although, we have younger kids also expressing those feelings. What we know in general, is that if someone reaches pubertal developmental stage and they are still persistently expressing a transgender identity, nearly all of those people will continue to have a transgender identity into adulthood.
There are some young children, who in preschool, early school years, may have some cross-gender identity or play or things that like that. Some of those kids will end up accepting their biologic sex, but if you reach that pubertal stage of the development and you begin puberty, and you’re still proclaiming a transgender identity, it is highly unlikely that that’s going to change.
Melanie: And Dr. Lewis, how is individualized care established as we’ve just spoken about the ideal age at which patients should be seen as being crucial to their emotional wellbeing, as Dr. Garwood has just said. How do you individualize that care, whether they’re a younger child or an adolescent, as being crucial to that emotional strength that they need to deal with this as they grow older?
Dr. Lewis: Well, as Dr. Garwood was saying, we do not have a cookie cutter approach, so even if the same age and gender identity comes to us, they may have different desires and expectations. When someone comes as a pre-pubertal patient, it’s mostly support and gender affirming approach to make sure that we do not affect… the child has normal psycho-social development, and has not fallen to that path that Dr. Garwood was talking about of depression, and anxiety, and suicidality.
One they have started puberty, we can consider doing something called pubertal blockers, which is hormone that stops puberty and is fully reversible, if we were to take the… stop administering the hormone and it stops their puberty and prevents other pubertal progression that could potentially worsen gender dysphoria, worsen issues related to depression, anxiety. And it also would prevent the development of secondary sexual characteristics, that in the future may be more difficult to erase or to mitigate.
For patients that come to us older, or when we have patients who have been following and have been on blockers and they’re ready to transition to using gender affirming hormones, or what people most know as cross-sex or cross-gender hormones. That is when we can start having the discussions about giving testosterone and or estrogen. Not every patient that comes to us wants hormonal intervention, not every patient that comes to us needs surgical intervention. We sort of give the approach of what is all the options available to a patient, and in conjunction with the patient and their family, we make a decision after discussing the benefits and risk and complications and costs, and everything else about the therapies. What would you use the best route to go for that patient? So, we do not have a particular pathway that says, “Oh, you have now reached this stage of puberty. You have to start this dose of this medication and that’s that.” It’s a group decision and a collaborative effort, to make sure that we do what’s best for the patient.
Melanie: Dr. Garwood, discuss the multi-disciplinary aspect of the clinic and what other services are incorporated into it.
Dr. Garwood: Well, I think the partnership of pediatric endocrinology and adolescent medicine can begin with, in the formation of this clinic is unique and also going to be very beneficial for kids as we talked about that comorbidity that we can see with mental health concerns, such as depression and anxiety. Being able to work closely together from both the Endocrine management as well as the mental health management will be really helpful for teens.
We also will include support from social work, so someone who can help families access resources such as, social support for both parents and for their kids. In some cases, help provide resources for schools, teachers and educators and principals are also working with transgender students to make the environment supportive for them and to help make accommodations as necessary. So, providing schools in the region with access to educational resources will be really important.
We hope to have nurse coordination, so that if you’re insurance does not support the recommended treatment, we have people who can help with filing appeals with insurance companies or help coach parents through that process, to try to get access to treatment in a more efficient way. And then we will work closely with community mental health providers and our St Louis Children’s Hospital psychology department, to help provide mental health support also. In some cases, to help a child explore their understanding of their gender identity or sexual orientation, and in some cases, to help support readiness for transition and adjustment to transition because those are also developmental processes for adolescents, as they’re going through the transition process. So, to help with the mental health support and that adjustment, and to help support the families during that time, too.
Dr. Lewis: I would like to add that, in addition to the services that are… that could be available in clinic, we also are having discussions with various divisions within Washington University to provide other aspects for care. So, psychology and psychiatry to assist with mental health efforts, reproductive endocrinology to provide guidance and fertility preservation, gynecology to provide cervical, vaginal, uterine and ovarian health. Speech therapy, to help patients achieve the tonality and phonation that they want with their voice. Dermatology, to help with things like acne, hair loss, changes in skin that may want to be affected, as well as plastic and urology. Plastic surgery and urologic surgery, to help with top surgery and bottom surgery.
Melanie: Dr. Garwood, you mentioned earlier about parents and help with some of the billing. What does the clinic in support for parents as well because while this is about the child and you are working with this child. The parents are going through their own bit of emotional insecurity, they’re not sure what their supposed to, in terms of support, and their own mental health, and do you help them with this?
Dr. Garwood: Well, I think the first thing we can offer is an evidence-based educational background for parents, so that they know that they’re not alone and that there are services that can be provided to their children that can help alleviate the pain, discomfort, distrust. That they’ve seen their child experience. So, I think we offer education and also hope that this can get better, and that we can support their child and their family through this process, so that we can work with them and walk with them along this path and in this journey. Then we also are really intentionally creating a network of community therapists for both kids and for parents to help with mental health support, and then I have to say a huge support for parents in this community is an organization called Transparent, which is a parent support group for parents of transgender kids and we regularly connect families to that network as they weren’t aware of those services, and that continues to be a really important support for the parents and families of kids.
I think, as doctors we can give a lot of information, a lot of education, but nothing can really, I think, speak to the heart of a parent like a peer who’s going through the same thing or who has been through that journey five years, and can tell them, “I was there, I know how you’re feeling, but here’s where we are now and life is great. And my child is happy and thriving.” And that I think is a real gift.
Melanie: In summary, Dr. Lewis, please tell other physicians what you’d like them to know about Washington University Transgender Center at St Louis Children’s Hospital, and when a child should be referred to the center.
Dr. Lewis: So, our mission is really to provide comprehensive care to all gender variant children in adolescence, to ensure that they grow and develop as healthy individuals of able to take their rightful place in our society in a helpful way. We plan to develop individual care plans that meet each patient’s medical and emotional needs, as well as their families for information and support as Dr. Garwood was just now saying. And also, to help connect them to community-based peer academic advocacy and legal resources. What we would like for someone to do if they’re interested in referring their patient is to contact our division of pediatric endocrinology which is, 3144546051, to establish care and referral for our gender center. We’re seeing patients up till 21 years of age for new referrals, for patients that we already have established care, we will see probably close through to 24 years, and we will also help coordinate transition to adult providers and any other resources that they may need.
Melanie: And Dr. Garwood, last word to you. What can a pediatrician expect from your team after referral and so far as communication with the referring physician and your team approach, kind of wrap it all up for us.
Dr. Garwood: So, every patient seen in the Gender Center will have a comprehensive evaluation by Dr. Lewis or myself and our recommendations will be clearly made, and all pediatricians will have, either a dictated letter or note sent to them or copied to them through our electronic records system. We’re also available for ongoing consultation by phone, questions about their child that they referred to us, and other support that we can offer, either through Dr. Lewis, myself or through our multi-disciplinary support staff that will be working with us. [INAUDIBLE 00:16:08]
Melanie: Thank you both so much for being with us today. A physician can refer a patient by calling Children’s Direct Physician Access Line at, 1800678HELP, that’s 18006784357. You’re listening to Radio Rounds with St Lewis Children’s Hospital. For more information on resources available at St Louis Children’s Hospital, you can go to, StLouisChildrens.org, that’s StLouisChildrens.org. This is Melanie Cole, thanks so much for listening.