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Navigating Down Syndrome

Prenatal (Prior to Birth)

Receiving the Diagnosis

Josh & Jessica Egan

Channel 2 Baby your Baby Podcast:

"Our Sweet Gwendolyn"

Prenatal Outreach Program

Receiving the diagnosis that your baby has Down syndrome can cause a variety of emotions.  While these feelings are normal, and this journey called Down syndrome will have its challenges and unique experiences, you are not alone.  According to the Utah Department of Health, approximately 80-100 babies are born with Down syndrome each year in the state of Utah. 

UDSF is here to answer your questions and to connect you to other caring parents who have walked in your shoes.  Many parents find that associating with other parents who have a child with Down syndrome is the best source of encouragement and hope as they work through their baby's diagnosis.  UDSF invites you to connect with one of our parent volunteers from our Prenatal Outreach Program.  They can answer questions, offer support, and schedule an in-person visit at your request. 

*Due to the coronavirus pandemic, UDSF will be offering video conferencing with one of our parent volunteers instead of in-person visits.

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Health Care Information - Prenatal

Health Care Information for Families of Children with Down Syndrome: The Prenatal Period

The following health care Information was created by the American Academy of Pediatrics (AAP) for families of children with Down syndrome.  This document should be used together with the care given by your doctor. 

Consider testing as desired

Prenatal testing for genetic conditions is recommended for families who would like information to help them make decisions about a pregnancy. This testing should be done only after information about the tests has been discussed between the doctor and the family, and the family understands the risks and benefits of the testing. Learn More.

Counseling

If Down syndrome (trisomy 21) or any other chromosome change that causes Down syndrome is found by prenatal testing, the family should receive counseling to explain the issues and provide support for the family. Here are a list of genetic counselors in Utah:  (1) University of Utah Genetics,  (2) Intermountain Healthcare Rachel Holman (Murray (801) 507-7408),  Lauren Wallace (Murray (801) 507-7400, Teleconference St. George (435) 688-4770, Salt Lake-LDS Hospital (801) 408-3446, Ogden (801) 387-4647, & Lauren Eekhoff (Salt Lake - LDS Hospital (801) 408-3446).

Prenatal heart testing

Because there is a high risk of heart problems at birth in Down syndrome, echocardiography (an ultrasound picture of the heart) done during the pregnancy can provide information that may be useful for the remainder of the pregnancy and for the delivery. This information may help with decisions such as where to deliver the baby and the medical services needed late in pregnancy or at delivery.

 

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