What to Expect

Before Birth

Often, a difference of the genitalia may be noted on a prenatal ultrasound. If there is concern regarding a prenatal DSD or complex sex chromosome aneuploidy, expectant mothers can be referred to the Fetal and Pregnancy Health Program and will be offered an appointment with the Stanford Children’s Health DSD and Sex Chromosomal Aneuploidies Program.

Expectant parents can meet with neonatologists from Lucile Packard Children’s Hospital Stanford to learn more about what to expect after birth. They will review the coordinated care provided by the DSD and Sex Chromosomal Aneuploidies Program and may recommend diagnostic tests for the medical care of the baby.

The family may also meet with prenatal genetic counselors and prenatal geneticists to discuss prenatal testing and diagnostic options.

A prenatal psychiatrist is available to review the family’s psychosocial needs.

After a family meets with our providers, they meet to determine the best place to deliver the baby and to develop an organized medical plan for the baby after birth. If the baby will be delivered locally (outside of Stanford), the program will coordinate with your baby’s local doctors to communicate a recommended medical plan for the baby after birth.

After Birth and During the Newborn Period

If there is concern for a DSD or complex sex chromosome aneuploidy after birth, your baby may be examined while still in the hospital, and additional testing may be recommended. Your baby may be seen by several specialists in endocrinology, urology, genetics, gynecology, and neonatology. Our team also provides social work and psychiatry support. Members of the Stanford Children’s Health DSD and Sex Chromosomal Aneuploidies Program will review the initial assessment and test results and discuss with you the plan for follow-up care after your family and baby are discharged from the hospital.

If your baby is healthy enough to go home soon after birth (and before test results have become available), a member of the medical team will call you with the results as soon as they are available, and we will see your baby in our outpatient clinic.

Older Children, Adolescents, and Young Adults

If your pediatrician is concerned about the possibility of a DSD or complex sex chromosomal aneuploidy in your child, he or she may request our program’s expertise by placing a referral. Your outpatient clinic visit may include appointments with specialists in the following areas:

Your child may see specialists in some or all of the areas listed above, and the needs of your family may change over time. Our program seeks to recognize the specific needs of your child and family to provide individualized care.