“He has taught us so much already! We are blessed to have Augustinas in our family.” When my pregnancy reached eighteen weeks, we had an ultrasound that resulted in Patau syndrome as my son’s diagnosis. I was told that there was a huge possibility of miscarriage. Our doctor of genetics let me know that the…

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“It was hard, but not impossible, because my love for Arleth and her eagerness to live, gave me the strength I needed to go on.” Arleth was born at 35 weeks and 6 days. She weighed 5 pounds and 13 ounces. She spent 23 days in the NICU, so she was baptized there since we…

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Trisomy Awareness Month Proclamations

March 1st begins 2021 Trisomy Awareness Month As of today, SOFT has received 2021 Trisomy Awareness Month Proclamations from 24 states. Although March has been declared and recognized as Trisomy Awareness Month for over 10 years it has taken some time to get the month officially recognized by individual state. Eight states would have declared…

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Republished with permission. Infants with the genetic disorders trisomy 13 or 18 are more likely to survive if they undergo heart surgery, a study from researchers at Stanford and the University of Arkansas has found. Heart surgery significantly decreases in-hospital mortality among infants with either of two genetic disorders that cause severe physical and intellectual…

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SOFT Trisomy Awareness Month Video Blast

  Join us for the Trisomy Awareness Month video blast! The Trisomy Awareness Month video blast is coming and we hope you will join us. We are going to blast social media with short 60 second videos to inform and educate people about our SOFT kids and their various Trisomy conditions. We invite all of…

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We have had a really happy, healthy second year with Claire! She’s been to the beach and is learning to crawl. She loves music, especially Raffi, and is very ticklish. At our 20 week anatomy scan, we were shocked. Our baby’s eyeballs were so underdeveloped, the doctor wasn’t sure if they were there at all.…

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Though this has not been an easy journey, it is one I would pick a million times over, just to meet our sweet boy. My husband and I first learned something was “wrong” when I was about 11 weeks pregnant, with Omar, who has full Trisomy 13. The doctor told me Omar had fluid in…

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“I would do it all again just to have the chance to hold my baby one more time.” On April 4, 2020 my life changed forever. I went into my 13 week ultrasound only to be told the baby was showing signs of Trisomy 13. I had no idea what this condition was, everything was…

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Dr. John Carey – Trisomy 13/18 The Basics Dr Carey explains the basics of how a trisomy occurs and the differences between full, partial and mosaic. From the SOFT 2020 Virtual Conference. Dr. John C. Carey Throughout his career, Dr. Carey has been interested in birth defect syndromes and the care of children with these…

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Dr. Nicole Birge & Dr. Meaghann WeaverHeartland Cares: Quality of Life and Family Impact in Caring for Children with Trisomy 13 and 18. From the SOFT 2020 Virtual Conference. About Dr. Nicole Birge:Nicole Birge M.D. is the Medical Director of the Neonatal Intensive Care Unit at Children’s Hospital and Medical Center Omaha.Children’s NICU is unique…

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