Pentalogy of Cantrell is a rare disorder characterized by: Omphalocele; Anterior diaphragmatic hernia; Sternal cleft; Ectopia cordis; and Intracardiac defect.
Dear dkschwab, Hello. My name is Alyse Lopez-Salm and I am a student doing research in Guatemala. I am staying with a family who has a 2 year old little boy with Pentalogy of Cantrell. The mother only speaks Spanish and an indigenous language- do you know of anyone else with a child with this defect who speaks Spanish I could connect her with? Do you have a child with the defect? She was told her son would not survive an operation and says she has never met anyone or found anyone whose child suffers from this defect. The area is very low in resources, but she luckily comes from a family with enough money to travel to Guatemala City, where the child receives treatment. She lives in the highlands, near Lake Atitlan, and comes from the Tz'Ujutil ethnic group, one of 22 in Guatemala. At any rate, please let me know when you are able if there are any Spanish-speaking mothers in the group, or, if you know of any resources for her. Thank you so much. My personal email is firstname.lastname@example.org Sincerely, Alyse Lopez-Salm
Hi, I am looking for more information about children who are growing up with pentology of cantrell.... any help would be great... Thanks
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