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 This organization has a pair of very interesting interviews with Pediatricians that talk about caring for a child with a Trisomy 18 diagnosis. What an eye-opener. "This site is dedicated to the families of children with Trisomy 18. We hope that you will find encouragement, support and practical advice for your family within these pages.
No Parent wants to hear the phrase "incompatible with life". In fact I cannot think of a more hopeless statement. If you are walking the path of Trisomy 18 then I am sure you have heard this phrase many times before. An the fact is that Trisomy 18 is a difficult thing to survive, deal with or for that matter even think about. Our prayer for you is that in the midst of this terrible illness you find hope. I know people see life and genetic illnesses in different ways, but the common thread that weaves through the tapestry of life is hope. Please take time read the stories of the families and find more information that paints a little different story about living with Trisomy 18. We love you and have been praying for you since the day our Son was diagnosed with this most difficult disease." |
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ABSTRACT: Intensive cardiac management such as pharmacological intervention for ductal patency (indomethacin and/or mefenamic acid for closure and prostaglandin E1 for maintenance) and palliative or corrective surgery is a standard treatment for congenital heart defects. However, whether it would be a treatment option for children with trisomy 13 or trisomy 18 syndrome is controversial because the efficacy on survival in patients with these trisomies has not been evaluated. We retrospectively reviewed 31 consecutive neonates with trisomy 13 or trisomy 18 admitted to our neonatal ward within 6 hr of birth between 2000 and 2005. The institutional management policies differed during three distinct periods. In the first period, both pharmacological ductal intervention and cardiac surgery were withheld. In the second, pharmacological ductal intervention was offered as an option, but cardiac surgery was withheld. Both strategies were available during the third period. The median survival times of 13, 9, and 9 neonates from the first, second, and third periods were 7, 24, and 243 days, respectively. Univariate and multivariate analyses confirmed that the patients in the third period survived significantly longer than the others. Intensive cardiac management consisting of pharmacological intervention for ductal patency and cardiac surgery was demonstrated to improve survival in patients with trisomy 13 or trisomy 18 in this series. Therefore, we suggest that this approach is 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.
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A must see for parents and medical professionals! This video explains the ethics and requirements for informed consent for treatment that every parent should fully understand prior to accepting treatment or declining treatment. (Go to video) |
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ABSTRACT - Management of neonates with trisomy 18 is controversial, supposedly due to the prognosis and the lack of precise clinical information concerning efficacy of treatment. To delineate the natural history of trisomy 18 managed under intensive treatment, we reviewed detailed clinical data of 24 patients with full trisomy 18 admitted to the neonatal intensive care unit of Nagano Children's Hospital, providing intensive treatment to those with trisomy 18, from 1994 to 2003. |
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Article here about the current RFPs seeking grants for research. |
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