NORD Guide to Rare Disorders SYNONYMS: Patau syndrome; Trisomy D syndrome. TREATMENT- Standard
Therapies: Because of the high mortality rate, management of children
with trisomy 13 is complicated. No standard therapies exist, but
symptoms can be treated medically, surgery can be performed for many of
the manifestations. Because 80% of infants have a cogenital
cardiovascular malformation, cardiac surgery can be considered for a
child who is older than a few weeks or months, although few data exists
to help in the risk/benefit decision of such intervention.
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Suggestions for care include neonatal echocardiography, ophthalmology
consultations, referral to a feeding specialist or team, referral to
early intervention and periodic hearing tests. Older children require
regular checks for scoliosis.
California Department of Public Health California Birth Defects
Monitoring Program - Medical Care Treatment - Any course of
treatment will be decided on an individual basis. Routine follow up care
for a child with Trisomy 13 includes cardiac evaluations,
evaluations, MRI of the head, abdominal ultrasound, hearing tests,
referral for infant pre-school/early intervention programs, scoliosis
checks through childhood and getting routine immunizations2. Family
support and genetic counseling are recommended. The California Department of Public Health highlights the photo of Tucker
Reite on their Trisomy 13 information page. Tucker lived for 2 years with trisomy
13. After having lost Tucker, Jim and Lori Reite opened their hearts
again when they heard through this web site
message boards that a little boy was in need of adoption. Meet Joey
You see the typical literature on Patau Syndrome Trisomy 13, but you will not
see much hope, nor the many photos and videos of living survivors.
You will only find the reality of this diagnosis on this site, with the largest
collection of "realistic hope" of how these kids live and are loved.
***We believe *** Tenecia Hargrave is the oldest living Full
Trisomy 13 born in 1982 Lynne King is the oldest living Partial
Trisomy 13 born in 1959, Becca Trewin is the oldest living trisomy
13 Mosaic born in 1975
If We Hold On Together Song Copyright 2002 by Patricia Welch, Ltd. All rights reserved.
Used with permission.
All material on this site reflects our personal journey with raising a Trisomy
13 (Patau Syndrome) - child. It is not meant to replace any medical advise of a professional
familiar with your specific condition. The personal journeys of any parents on
this site are only their opinions and their own journey with having a Trisomy 13
child. You should consult with your own physician or other medical professional
regarding the opinions or recommendations expressed within these pages as to
your own child's symptoms and medical condition.