See All Conditions

Diagnosis & Treatment

Competent, collaborative multidisciplinary care assures the best possible outcome for a child with a difference of sex development (DSD). Our team at Lurie Children’s combines pediatric endocrinologists, urologists, surgeons and nurses in addition to an ethicist and child psychologist experienced in DSD and gender issues. To provide optimal care for each child, we work with other specialists, including neonatologists, geneticists and pediatric gynecologists.

Prenatal Detec​tion

Increasingly, parents may learn of a possible DSD before birth. For example, a family may learn the child’s chromosomes from amniocentesis, or prenatal ultrasound may detect abnormal genital development. In these situations, prenatal consultation may be useful.

Detec​tion in Infants

The first question after a baby is born is usually, “Is the baby a boy or a girl?” Sometimes, the genitalia are not clearly that of a boy or a girl. This situation is referred to as ambiguous genitalia. This is a challenging time for parents who have waited throughout the pregnancy for this exciting moment. When it occurs, the labor and delivery team consults our specialists in DSD. We see a wide range of abnormalities in infants born with these conditions.

For a newborn, the process of diagnosing the specific condition and determining medical needs begins right away after birth. The team accomplishes this evaluation at the hospital and provides any urgent care that may go along with the condition. For example, an opening for urination can be missing or a baby may not have enough cortisol, a life-sustaining hormone. These conditions must be treated early to avoid serious complications. At first, the most important concerns are these serious health issues. As our medical team addresses the health issues, we also gather information to help assign the gender of rearing as quickly as possible. 

Sometimes, a question of a DSD is raised after the baby has gone home from the hospital. In this situation, the team recommends the best plan to diagnose the condition. This may include admission to the hospital or outpatient consultation with the specialists. 

Detection i​n Children & Adolescents

A DSD can also be found after infancy. While these situations may be less obvious, they are just as important. One of the most common situations is when hernia surgery in a presumed girl finds a testicle present in the pelvis. Other, rarer situations include when a girl starts to develop masculine characteristics at puberty or a boy starts to have growth of the penis at a young age.

Diagn​​osis

Diagnosing the medical condition and planning healthcare involves many specialists. During this uncertain time, parents experience a strong mix of emotions; so, too, may a child with a possible DSD. Families can rely on great sensitivity from everyone on our team for your family’s privacy and our respect for the emotional difficulty of this time. Our psychologist is an integral and knowledgeable part of the team who assists each family from the beginning of the evaluation.

Tests & Ex​ams

Our thorough approach uses physical examination and many types of testing to determine what is going on inside and outside. The process seems complicated because we need to gather much information. We need to learn about the child’s genetic makeup, how the hormones are working and the exact anatomy of the internal and external genital structures. The information helps determine whether the child should be raised as a girl or a boy.

During this process, the parents’ presence is very helpful as our specialists examine the child. Parents come to understand their child’s anatomy and become more comfortable with the situation. In addition, we explain the testing that is needed and reassure the family about the amount of blood drawn for the tests. Testing has to be done at specific times and often over several days. The tests are usually these:

  • Karyotype test to determine chromosomes
  • Hormone tests 
  • Electrolyte tests such as sodium, potassium and glucose levels 
  • Radiographic testing (Ultrasound, MRI, genitogram)

For an infant, the series of test and exams help the team, with the child’s parents, to make a gender assignment (as a boy or girl), keep the child healthy and plan long-term care. Our team understands that this is a difficult time for parents to wait for the results of testing. Our goal is to determine results as quickly as possible, but most importantly for this work to be done correctly. Some of the testing may require multiple days or weeks for results. 

We require as complete an understanding as possible because this information often gives us clues as to whether the child will feel most like a girl or most like a boy as they grow up. Having all the information for the team and parents is important before assigning a gender to the child.  

For children and adolescents, the evaluation often has less urgent medical concerns, but our team respects the family’s concern and anxiety at this time, too. We know that parents want to understand their child’s condition as quickly as possible. We also know that acknowledging an older child’s sensitivity is important. We take care to minimize genital examination. 

Our psychologist can be very helpful to parents in explaining matters to children in an age-appropriate, reassuring and loving way. We also provide access to informal and formal peer support connections for the child, parents, other relatives, school personnel and caregivers as desired by the family.

Treatment

Making good medical decisions for a child is one of the serious responsibilities of parenthood. With DSDs, these decisions may be particularly difficult. Our team helps prepare families for each decision point. The following are some of the issues and options many families eventually face:

  • Gender assignment: The gender parents choose to raise an infant if the sex isn’t obvious
  • Hormone therapy: Needs and options for hormone replacement throughout development
  • Surgery: Needs and options for infants, adolescents and adults
  • Mental health support: Healthy social, cultural and psychological attitudes of parents and the growing child 

Our goal is for each child to live a long, healthy, happy life. A DSD creates complex questions for parents early in the child’s life. The family and medical team must work together to make the best choices for the child and family. As the child is able and the family feels it is appropriate, we involve the child in decisions as well. 

Families find it very useful to work through key decisions with trusted members of the care team. The child’s specific condition determines which members of the medical team are most involved. These specialists have significant experience and have chosen to specialize in DSD care. They work with you to be sure that you understand your child’s situation, and you should feel comfortable asking about any recommendations or guidelines. Families also find significant support from trusted family members, friends, support groups, advocacy organizations and their religious support system. 

Gender Assign​ment

When a child is born with ambiguous genitalia, a gender should not be assigned until the proper information is available. Unfortunately, this also means waiting to name the child, which can be hard for parents. This waiting, however, allows the medical team to gather information and help the family make the best decision possible.

For many DSDs, there’s much information available in the medical literature and experience to be accurate in predicting whether the child will grow up to feel like a girl or feel like a boy. In these situations, as soon as the cause for the DSD is known, the gender can be assigned. 

In other situations, however, predicting how the child will feel as he or she grows up is harder. In such cases, we take many things into consideration. These include the child’s appearance, the body’s ability to make certain hormones, the likely ability for sexual function as an adult and fertility potential as an adult. We encourage the family to bond with and enjoy their beautiful new child while we collect and assess this information as diligently and efficiently as possible. We are then able to provide information and guidance to the family to make the choice for the child. 

Horm​one Therapy

Two types of hormone treatments may be needed or considered in DSDs. The first type replaces life-sustaining hormones that the child must have. Two examples are cortisol and aldosterone. The body may not be able to make these hormones in certain types of DSDs. Cortisol is the hormone that allows the body to respond to physical stress, and aldosterone helps to maintain the body’s water and salt balance. Without these hormones, a child may develop an adrenal crisis, which is life threatening. 

The second type replaces hormones such as estrogen and testosterone. With some DSDs, the body isn’t able to make the appropriate amount of these hormones. As a result, the child may not develop breast tissue or have growth of the penis as typically expected at puberty. The pediatric endocrinologist gathers information about the child’s hormone status to determine which of these treatments may be necessary or helpful. 

Su​rgery

Surgery may also be a consideration for a child with a DSD. Some surgeries are necessary and others are considered elective, or optional. For example, a child born without an opening for urination experiences life-threatening complications if such an opening is not constructed. Most surgeries are not emergencies in children with DSDs. Such surgeries may include a biopsy (obtaining a sample) of the gonad to determine whether it has ovarian and/or testicular tissue, surgery to separate the opening to the vagina and the urethra (the tube through which urine exits the body), surgery to reduce the size of a large clitoris or surgery to remove a gonad that is at risk to develop cancer.

Over the years, the approach to surgery in children with DSDs has changed. In the past, attention was primarily on making a child appear as close to the desired gender of rearing as possible and performing surgeries as soon as possible. Unfortunately, this approach and some older surgical techniques didn’t have the desired results and/or didn’t preserve sexual function. 

A better understanding of the desires of individuals with DSDs has led to our current approach. Surgeries that aren’t absolutely necessary are weighed carefully and discussed thoroughly with the child’s family as they relate to timing and functionality. Personal values are given careful consideration and respect. In addition to the surgeons, our team has a well-informed ethicist and a psychologist with experience helping families think about elective surgeries. Thoughtful discussions and reflection help highlight cultural and religious factors important to the family and individual. 

We are committed to involving the child in decision making for surgery when this is possible or desired by the family. We believe it is very important for the family to fully understand the functional and cosmetic outcomes of surgery. 

Mental Health Support

Many families in our care may benefit greatly from talking with a psychologist on our mental health team about issues related to DSD. Our psychologists have specialized training in psychosocial and mental health issues related to DSD and can help families at any stage in their care.

Our psychologists often provide support to families in a number of ways, including (but not limited to):

  • Supporting the family of a newborn or toddler while they learn about DSD and their treatment options
  • Helping parents explain DSD-related issues to their family and friends
  • Supporting parents as they calibrate to the adjustments of caring for a child with a chronic medical condition
  • Partnering with parents to develop age-appropriate ways to explain DSD-related issues to their children
  • Helping children overcome worry and stress related to taking medication, undergoing tests or medical procedures, and hospital stays
  • Helping children cope with worry and stress related to gender identity, or body changes associated with puberty
  • Helping children and adolescents foster skills to manage interpersonal relationships and maintain healthy self-esteem
  • Facilitating peer-support opportunities for families with DSD through ongoing support groups and through social family outings

We match the diverse support needs of our families by providing them with an array of ways to meet one-on-one with our child and adolescent psychologists. Some families choose to meet with a psychologist once or twice a year and some choose to meet more regularly. Other families choose to meet with one of our psychologists just once in order to have this relationship established should a need for support arise at some point in the future. 

To find out more information about our clinic’s mental health support, contact our Program Coordinator, Jen Leininger, at 773.606.6056 or e-mail Jen at jleininger@luriechildrens.org. 

Diagnosis &Treatment
Competent, collaborative multi-disciplinary care assures the best possible outcome for a child with a DSD. Our team at Lurie Children’s combines pediatric endocrinologists, urologists, surgeons and nurses in addition to an ethicist and child psychologist experienced in DSD and gender issues. To provide optimal care for each child, we work with other specialists, including neonatologists, geneticists and pediatric gynecologists.
Prenatal Detection
Increasingly, parents may learn of a possible DSD before birth. For example, a family may learn the child’s chromosomes from amniocentesis, or prenatal ultrasound may detect abnormal genital development. In these situations, prenatal consultation may be useful.
Detection in Infants
The first question after a baby is born is usually, “Is the baby a boy or a girl?” Sometimes, the genitalia are not clearly that of a boy or a girl. This situation is referred to as ambiguous genitalia. This is a challenging time for parents who have waited throughout the pregnancy for this exciting moment. When it occurs, the labor and delivery team consults our specialists in DSD. We see a wide range of abnormalities in infants born with these conditions. Genitalia may be completely ambiguous or may appear more like a boy or more like a girl.

For a newborn, the process of diagnosing the specific condition and determining medical needs begins right away after birth. The team accomplishes this evaluation at the hospital and provides any urgent care that may go along with the condition. For example, an opening for urination can be missing or a baby can develop an adrenal crisis, which can be life threatening. These conditions must be treated early to avoid serious complications. At first, the most important concerns are these serious health issues. As our medical team addresses the health issues, we also gather information to help assign the gender of rearing as quickly as possible.

Sometimes, a question of a DSD is raised after the baby has gone home from the hospital. In this situation, the team recommends the best plan to diagnose the condition. This may include admission to the hospital or outpatient consultation with the specialists.
Detection in Children & Adolescents
Sometimes, a DSD is found after infancy. While these situations may be less obvious, they are just as important. One of the most common situations is when hernia surgery in a presumed girl finds a testicle present in the pelvis. Other, rarer situations include when a girl starts to develop masculine characteristics at puberty or a boy starts to have growth of the penis at a young age.
Diagnosis
Diagnosing the medical condition and planning healthcare involves many specialists. During this uncertain time, parents experience a strong mix of emotions; so, too, may a child with a possible DSD. Families can rely on great sensitivity from everyone on our team for your family’s privacy and our respect for the emotional difficulty of this time. Our psychologist is an integral and knowledgeable part of the team who assists each family from the beginning of the evaluation.
Tests & Exams
Our thorough approach uses physical examination and many types of testing to determine what is going on inside and outside. The process seems complicated because we need to gather much information. We need to learn about the child’s genetic makeup, how the hormones are working and the exact anatomy of the internal and external genital structures. The information helps determine whether the child should be raised as a girl or a boy.

During this process, the parents’ presence is very helpful as our specialists examine the child. Parents come to understand their child’s anatomy and become more comfortable with the situation. In addition, we explain the testing that is needed and reassure the family about the amount of blood drawn for the tests. Testing has to be done at specific times and often over several days. The tests are usually these:

    Karyotype test to determine chromosomes
    Hormone tests
    Electrolyte tests such as sodium, potassium and glucose levels
    Adrenal tests
    Ultrasound of pelvis (an MRI or genitogram is sometimes a useful follow-up)


For an infant, the series of test and exams help the team, with the child’s parents, to make a gender assignment (as a boy or girl), keep the child healthy and plan long-term care. Our team understands that this is a difficult time for parents to wait for the results of testing. Our goal is to determine results as quickly as possible, but most importantly for this work to be done correctly. Some of the testing may require multiple days or weeks for results.

We require as complete an understanding as possible because this information often gives us clues as to whether the child will feel most like a girl or most like a boy as they grow up. Having all the information for the team and parents is important before assigning a gender to the child. 

For children and adolescents, the evaluation often has less urgent medical concerns, but our team respects the family’s concern and anxiety at this time, too. We know that parents want to understand their child’s condition as quickly as possible. We also know that acknowledging an older child’s sensitivity is important. We take care to minimize genital examination.

Our psychologist can be very helpful to parents in explaining matters to children in an age-appropriate, reassuring and loving way. We also provide access to informal and formal peer support connections for the child, parents, other relatives, school personnel and caregivers as desired by the family.
Treatment
Making good medical decisions for a child is one of the serious responsibilities of parenthood. With DSDs, these decisions may be particularly difficult. Our team helps prepare families for each decision point. The following are some of the issues and options many families eventually evaluate.

    Gender assignment: The gender parents choose to raise an infant if the sex isn’t obvious
    Hormone therapy: Needs and options for hormone replacement throughout development
    Surgery: Needs and options for infants, adolescents and adults
    Psychosocial support: Healthy social, cultural and psychological attitudes of parents and the growing child


Our goal is for each child to live a long, healthy, happy life. A DSD creates complex questions for parents early in the child’s life. The family and medical team must work together to make the best choices for the child and family. As the child is able and the family feels it is appropriate, we involve the child in decisions as well.

Families find it very useful to work through key decisions with trusted members of the care team. The child’s specific condition determines which members of the medical team are most involved. These specialists have significant experience and have chosen to specialize in DSD care. They work with you to be sure that you understand your child’s situation, and you should feel comfortable asking about any recommendations or guidelines. Families also find significant support from trusted family members, friends, support groups, advocacy organizations and their religious support system.
Gender Assignment
When a child is born with ambiguous genitalia, a gender should not be assigned until the proper information is available. Unfortunately, this also means waiting to name the child, which can be hard for parents. This waiting, however, allows the medical team to gather information and help the family make the best decision possible.

For many DSDs, there’s much information available in the medical literature and experience to be accurate in predicting whether the child will grow up to feel like a girl or feel like a boy. In these situations, as soon as the cause for the DSD is known, the gender can be assigned.

In other situations, however, predicting how the child will feel as he or she grows up is harder. In such cases, we take many things into consideration. These include the child’s appearance, the body’s ability to make certain hormones, the likely ability for sexual function as an adult and fertility potential as an adult. We encourage the family to bond with and enjoy their beautiful new child while we collect and assess this information as diligently and efficiently as possible. We are then able to provide information and guidance to the family to make the choice for the child.
Hormone Therapy
Two types of hormone treatments may be needed or considered in DSDs. The first type replaces life-sustaining hormones that the child must have. Two examples are cortisol and aldosterone. The body may not be able to make these hormones in certain types of DSDs. Cortisol is the hormone that allows the body to respond to physical stress, and aldosterone helps to maintain the body’s water and salt balance. Without these hormones, a child may develop an adrenal crisis, which is life threatening.

The second type replaces hormones such as estrogen and testosterone. With some DSDs, the body isn’t able to make the appropriate amount of these hormones. As a result, the child may not develop breast tissue or have growth of the penis as typically expected at puberty. The pediatric endocrinologist gathers information about the child’s hormone status to determine which of these treatments may be necessary or helpful.
Surgery
Surgery may also be a consideration for a child with a DSD. Some surgeries are necessary and others are considered elective, or optional. For example, a child born without an opening for urination experiences life-threatening complications if such an opening is not constructed. Most surgeries are not emergencies in children with DSDs. Such surgeries may include a biopsy (obtaining a sample) of the gonad to determine whether it has ovarian and/or testicular tissue, surgery to separate the opening to the vagina and the urethra (the tube through which urine exits the body), surgery to reduce the size of a large clitoris or surgery to remove a gonad that is at risk to develop cancer.

Over the years, the thinking regarding surgery in children with DSDs has changed. In the past, attention was primarily on making a child appear as close to the desired gender of rearing as possible and performing surgeries as soon as possible. Unfortunately, this approach and some older surgical techniques didn’t have the desired results or didn’t preserve sexual function.

A better understanding of the desires of individuals with DSDs has led to a different approach today. Surgeries that aren’t absolutely necessary are weighed carefully and discussed thoroughly with the child’s family. Personal values are given careful consideration and respect. In addition to the surgeons, our team has a well-informed ethicist and a psychologist with experience helping families think about elective surgeries. Thoughtful discussions and reflection help highlight cultural and religious factors important to the family and individual.

We are committed to involving the child in decision making when this is possible or desired by the family. We believe it is very important for the family to understand the issues regarding surgery. Diagnosis &Treatment
Competent, collaborative multi-disciplinary care assures the best possible outcome for a child with a DSD. Our team at Lurie Children’s combines pediatric endocrinologists, urologists, surgeons and nurses in addition to an ethicist and child psychologist experienced in DSD and gender issues. To provide optimal care for each child, we work with other specialists, including neonatologists, geneticists and pediatric gynecologists.
Prenatal Detection
Increasingly, parents may learn of a possible DSD before birth. For example, a family may learn the child’s chromosomes from amniocentesis, or prenatal ultrasound may detect abnormal genital development. In these situations, prenatal consultation may be useful.
Detection in Infants
The first question after a baby is born is usually, “Is the baby a boy or a girl?” Sometimes, the genitalia are not clearly that of a boy or a girl. This situation is referred to as ambiguous genitalia. This is a challenging time for parents who have waited throughout the pregnancy for this exciting moment. When it occurs, the labor and delivery team consults our specialists in DSD. We see a wide range of abnormalities in infants born with these conditions. Genitalia may be completely ambiguous or may appear more like a boy or more like a girl.

For a newborn, the process of diagnosing the specific condition and determining medical needs begins right away after birth. The team accomplishes this evaluation at the hospital and provides any urgent care that may go along with the condition. For example, an opening for urination can be missing or a baby can develop an adrenal crisis, which can be life threatening. These conditions must be treated early to avoid serious complications. At first, the most important concerns are these serious health issues. As our medical team addresses the health issues, we also gather information to help assign the gender of rearing as quickly as possible.

Sometimes, a question of a DSD is raised after the baby has gone home from the hospital. In this situation, the team recommends the best plan to diagnose the condition. This may include admission to the hospital or outpatient consultation with the specialists.
Detection in Children & Adolescents
Sometimes, a DSD is found after infancy. While these situations may be less obvious, they are just as important. One of the most common situations is when hernia surgery in a presumed girl finds a testicle present in the pelvis. Other, rarer situations include when a girl starts to develop masculine characteristics at puberty or a boy starts to have growth of the penis at a young age.
Diagnosis
Diagnosing the medical condition and planning healthcare involves many specialists. During this uncertain time, parents experience a strong mix of emotions; so, too, may a child with a possible DSD. Families can rely on great sensitivity from everyone on our team for your family’s privacy and our respect for the emotional difficulty of this time. Our psychologist is an integral and knowledgeable part of the team who assists each family from the beginning of the evaluation.
Tests & Exams
Our thorough approach uses physical examination and many types of testing to determine what is going on inside and outside. The process seems complicated because we need to gather much information. We need to learn about the child’s genetic makeup, how the hormones are working and the exact anatomy of the internal and external genital structures. The information helps determine whether the child should be raised as a girl or a boy.

During this process, the parents’ presence is very helpful as our specialists examine the child. Parents come to understand their child’s anatomy and become more comfortable with the situation. In addition, we explain the testing that is needed and reassure the family about the amount of blood drawn for the tests. Testing has to be done at specific times and often over several days. The tests are usually these:

    Karyotype test to determine chromosomes
    Hormone tests
    Electrolyte tests such as sodium, potassium and glucose levels
    Adrenal tests
    Ultrasound of pelvis (an MRI or genitogram is sometimes a useful follow-up)


For an infant, the series of test and exams help the team, with the child’s parents, to make a gender assignment (as a boy or girl), keep the child healthy and plan long-term care. Our team understands that this is a difficult time for parents to wait for the results of testing. Our goal is to determine results as quickly as possible, but most importantly for this work to be done correctly. Some of the testing may require multiple days or weeks for results.

We require as complete an understanding as possible because this information often gives us clues as to whether the child will feel most like a girl or most like a boy as they grow up. Having all the information for the team and parents is important before assigning a gender to the child. 

For children and adolescents, the evaluation often has less urgent medical concerns, but our team respects the family’s concern and anxiety at this time, too. We know that parents want to understand their child’s condition as quickly as possible. We also know that acknowledging an older child’s sensitivity is important. We take care to minimize genital examination.

Our psychologist can be very helpful to parents in explaining matters to children in an age-appropriate, reassuring and loving way. We also provide access to informal and formal peer support connections for the child, parents, other relatives, school personnel and caregivers as desired by the family.
Treatment
Making good medical decisions for a child is one of the serious responsibilities of parenthood. With DSDs, these decisions may be particularly difficult. Our team helps prepare families for each decision point. The following are some of the issues and options many families eventually evaluate.

    Gender assignment: The gender parents choose to raise an infant if the sex isn’t obvious
    Hormone therapy: Needs and options for hormone replacement throughout development
    Surgery: Needs and options for infants, adolescents and adults
    Psychosocial support: Healthy social, cultural and psychological attitudes of parents and the growing child


Our goal is for each child to live a long, healthy, happy life. A DSD creates complex questions for parents early in the child’s life. The family and medical team must work together to make the best choices for the child and family. As the child is able and the family feels it is appropriate, we involve the child in decisions as well.

Families find it very useful to work through key decisions with trusted members of the care team. The child’s specific condition determines which members of the medical team are most involved. These specialists have significant experience and have chosen to specialize in DSD care. They work with you to be sure that you understand your child’s situation, and you should feel comfortable asking about any recommendations or guidelines. Families also find significant support from trusted family members, friends, support groups, advocacy organizations and their religious support system.
Gender Assignment
When a child is born with ambiguous genitalia, a gender should not be assigned until the proper information is available. Unfortunately, this also means waiting to name the child, which can be hard for parents. This waiting, however, allows the medical team to gather information and help the family make the best decision possible.

For many DSDs, there’s much information available in the medical literature and experience to be accurate in predicting whether the child will grow up to feel like a girl or feel like a boy. In these situations, as soon as the cause for the DSD is known, the gender can be assigned.

In other situations, however, predicting how the child will feel as he or she grows up is harder. In such cases, we take many things into consideration. These include the child’s appearance, the body’s ability to make certain hormones, the likely ability for sexual function as an adult and fertility potential as an adult. We encourage the family to bond with and enjoy their beautiful new child while we collect and assess this information as diligently and efficiently as possible. We are then able to provide information and guidance to the family to make the choice for the child.
Hormone Therapy
Two types of hormone treatments may be needed or considered in DSDs. The first type replaces life-sustaining hormones that the child must have. Two examples are cortisol and aldosterone. The body may not be able to make these hormones in certain types of DSDs. Cortisol is the hormone that allows the body to respond to physical stress, and aldosterone helps to maintain the body’s water and salt balance. Without these hormones, a child may develop an adrenal crisis, which is life threatening.

The second type replaces hormones such as estrogen and testosterone. With some DSDs, the body isn’t able to make the appropriate amount of these hormones. As a result, the child may not develop breast tissue or have growth of the penis as typically expected at puberty. The pediatric endocrinologist gathers information about the child’s hormone status to determine which of these treatments may be necessary or helpful.
Surgery
Surgery may also be a consideration for a child with a DSD. Some surgeries are necessary and others are considered elective, or optional. For example, a child born without an opening for urination experiences life-threatening complications if such an opening is not constructed. Most surgeries are not emergencies in children with DSDs. Such surgeries may include a biopsy (obtaining a sample) of the gonad to determine whether it has ovarian and/or testicular tissue, surgery to separate the opening to the vagina and the urethra (the tube through which urine exits the body), surgery to reduce the size of a large clitoris or surgery to remove a gonad that is at risk to develop cancer.

Over the years, the thinking regarding surgery in children with DSDs has changed. In the past, attention was primarily on making a child appear as close to the desired gender of rearing as possible and performing surgeries as soon as possible. Unfortunately, this approach and some older surgical techniques didn’t have the desired results or didn’t preserve sexual function.

A better understanding of the desires of individuals with DSDs has led to a different approach today. Surgeries that aren’t absolutely necessary are weighed carefully and discussed thoroughly with the child’s family. Personal values are given careful consideration and respect. In addition to the surgeons, our team has a well-informed ethicist and a psychologist with experience helping families think about elective surgeries. Thoughtful discussions and reflection help highlight cultural and religious factors important to the family and individual.

We are committed to involving the child in decision making when this is possible or desired by the family. We believe it is very important for the family to understand the issues regarding surgery.