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April 19th Chicago Parade of Cherubs
As many of you are aware, 4/19 is going to be a big day for CDH awareness with parades in St. Louis, Washington DC, Peoria and the virtual parade. If I organized one in Chicago (at Children's Memorial Hospital), who would attend??
Let me know at nrubenstein@cherubs-cdh.org.
Thanks
Neil
Neil Rubenstein has been married since 2003 to his wife, Amy. He has two CDH survivors. His 1st CDH survivor (Aidan) was born in June 2010 after being diagnosed at 37 weeks. Aidan had surgery to repair his hernia when he was 4 days old. His surgeon discovered at that time that Aidan had no diaphragm at all, all his organs were in his chest (except for his liver), his heart had been pushed to the left side by his stomach, and he had two spleens (apparently not uncommon). Even with all this, Aidan did not need ECMO and was only in the NICU for 29 days. Aidan had a follow-up procedure at 13 months old to close up an abdominal hernia that his surgeon created to give his organs room to grow once she moved them all back to their proper location in his abdomen. His second CDH survivor was born on September 10. Brody had his hernia repair at 3 days old. All of Brody's organs except his liver and stomach were in his chest and his hernia was repaired using a Gortex patch. He will need the same follow-up surgery at around 12 months as Aidan.
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