{"id":103845,"date":"2023-10-09T17:11:31","date_gmt":"2023-10-09T22:11:31","guid":{"rendered":"https:\/\/www.unmc.edu\/newsroom\/?p=103845"},"modified":"2023-11-03T10:29:50","modified_gmt":"2023-11-03T15:29:50","slug":"down-syndrome-clinic-sets-children-families-up-for-success","status":"publish","type":"post","link":"https:\/\/www.unmc.edu\/newsroom\/2023\/10\/09\/down-syndrome-clinic-sets-children-families-up-for-success\/","title":{"rendered":"Down syndrome clinic sets children, families up for success"},"content":{"rendered":"
\n

The Down Syndrome Genetics Follow-up Clinic at the Munroe-Meyer Institute works with families whose babies have been diagnosed with Down syndrome to set the parents and child up for success. The clinic offers education, recommendations for health care and avenues of connection to community and MMI resources all year long, but it\u2019s highlighted during October, which is Down Syndrome Awareness Month.  <\/p>\n\n\n\n

\u201cIt\u2019s all about the families and how all of us can be helpful,\u201d said Beth Conover, a genetic counselor and pediatric nurse practitioner.<\/p>\n\n\n\n

Conover has spent more than 30 years in medical genetics, most of those at MMI.<\/p>\n\n\n\n

At the clinic, Conover sees babies with Down syndrome when they are about 6 months old. Many have been seen soon after birth by a medical geneticist and genetic counselor for diagnostic testing and initial genetic counseling. Conover helps review genetic information already discussed in the newborn period, assesses how the family is doing and determines what resources might be helpful. Conover explains test results and discusses the cause of Down Syndrome \u2013 an extra chromosome \u2013 as well as outlines the recurrence risk for parents and other family members.<\/p>\n\n\n\n

Conover also shares recommendations from the American Academy of Pediatrics about health surveillance, including hearing, vision and thyroid function.   <\/p>\n\n\n\n

\u201cI don\u2019t think parents realize how much they have accomplished. They\u2019re navigating a complicated system,\u201d Conover said.<\/p>\n\n\n\n

In cases where tests have been missed or delayed, the clinic will work with health care providers to order them.<\/p>\n\n\n\n

\u201cIt is easy for some things to be skipped when the family and health provider are juggling lots of issues,\u201d she said. <\/p>\n\n\n\n

One of Conover\u2019s favorite referrals is to MMI’s parent resource coordinators. The PRCs \u2014 also available for families who speak Spanish \u2014 help with navigating complicated medical and social service systems, such as applications for supplemental security income.<\/p>\n\n\n\n

Families also may be referred to MMI\u2019s physical therapy, occupational therapy or speech-language pathology departments, and MMI has a speech preschool that many children with Down syndrome attend.<\/p>\n\n\n\n

\u201cIt is so popular that families put their babies on the waiting list as infants,\u201d Conover said.  <\/p>\n\n\n\n

Other community resources include early childhood education through the schools; Children\u2019s Nebraska, which has a clinic for older babies and children with Down syndrome; and the Down Syndrome Alliance of the Midlands, which offers advocacy, new baby packets, a Facebook page<\/a> and social\/educational activities.<\/p>\n\n\n\n

Kids with Down syndrome may encounter extra challenges in medical areas and schooling but are typical in many ways, Conover said.<\/p>\n\n\n\n

\u201cI believe in the potential of people with Down syndrome,\u201d she said. \u201cI want to make sure nothing is getting in their way. We have many resources in Nebraska, and we are proud that MMI is part of that.\u201d<\/p>\n<\/a><\/div><\/div>","protected":false},"excerpt":{"rendered":"

The Down Syndrome Genetics Follow-up Clinic at the Munroe-Meyer Institute offers education, recommendations for health care and avenues of connection to community and MMI 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