Navigating Down Syndrome

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 New Parent Mentors from our New Parent Program.  They can answer questions, offer support, and schedule an *in-person visit at your request. Please allow up to 48 hours to be contacted.

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Receiving the Diagnosis

Josh & Jessica Egan

Channel 2 Baby your Baby Podcast:

"Our Sweet Gwendolyn"

First Call of Hope

Many parents have expressed that after they received the diagnosis of Down syndrome for their child, they just wanted to talk to somebody. They wanted someone who they could call immediately, someone who could relate and provide support. If you can't wait 48 hours for a New Parent Mentor to contact you, we are here to help now! We are one call away and your first call of hope! Please call 801-446-1994. If there is no answer, leave a message and we will call you back within a few hours. 

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  Lauren Wallace (Murray (801) 507-7400, Teleconference St. George (435) 688-4770, Salt Lake-LDS Hospital (801) 408-3446, Ogden (801) 387-4647), and 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.

Financing Your Child's Healthcare

A common question that parents ask when they receive a Down syndrome diagnosis for their child is, "How will we financially support and care for our child?"

There are financial assistance programs available throughout the community, state, and nationally that can help cover the costs of raising a child with Down syndrome. The Utah Medical Home Portal can help you navigate these programs and their qualifying requirements.