Notes from LivingWithTrisomy13.org

A special Thank You to Micayla, mom to Faith Constance. Inspired to put this slideshow together in celebration of Trisomy Awareness Month – March 2010

Trisomy 13 terms from around the world:

Patau Syndrome
Patau’s Syndrome
Trisomy 13 Syndrome
Trisomy D Syndrome
Trisomie 13
Trisomee
Trisome
Trisomic
Chromosomal Abnormalities
Chromosome Anomalies Disorder
Fetal Aneuploidy

Trisomy 13 Facts - from Support Organization for Trisomy 18, 13 and Related Disorders (SOFT) Information from Dr. John Carey, SOFT Medical Director  Trisomy 13 syndrome is a disorder of human chromosomes which occurs in approximately 1 in 10,000 live born infants. Trisomy 13 is due to the presence of an extra #13 chromosome....SOURCE http://www.trisomy.org/trisomy13.php

SOFT Support Organization For Trisomy 18, 13 and Related Disorders
Trisomy 13 Facts – Heart Defects, Medical Problems, Common Disorders and Routine Follow up care

You can use the SEARCH function on this  site to view many of the children who have had these Symptoms.

View photos and read how these kids are doing.

National Institutes of Health
Office of Rare Diseases Research (ORDR)
Genetic and Rare Diseases Information Center (GARD)
Treatment of children with trisomy 13 is planned on a case-by-case basis. The type of treatment given depends on the patient's individual condition.

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.
(You can SEARCH this site for stories)  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.

Intensive cardiac management in patients with trisomy 13 or trisomy 18
Am J Med Genet Part A. ...Treatment option for cardiac lesions associated with these trisomies. These data are helpful for clinicians and families to consider in the optimal treatment of patients with these trisomies. © 2008 Wiley-Liss, Inc.

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, eye 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 Reite”

Click here for Support Group list

Articles & Resource links From Medical Authorities

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.

Carrying to term, will give you the opportunity to embrace your child,
whether they live moments, hours or days.

A Quick look at Patau Syndrome Trisomy13 VIDEOS off BING

More tribute legacy and informational videos for Trisomy 13. (55+)

Trisomy 13 ~ Patau Syndrome – Family Blogs on the Internet Family Blog (Wordpress, Blogger with Blogspot and more) Sharing Trisomy Family experiences.