Parents to Tman (1/20/2009), Miss L (7/11/2011), and our CDH CHERUB Ray James (11/13/2013), diagnosed with posterior RCDH at 22 weeks/confirmed at 24 weeks. He was born at 39w3days gestation at Yale-New Haven Children's Hospital. He was placed on ECMO at 30 hours old, had repair surgery while on ECMO at 12 days old (most of his own tissue was used and a quarter-sized gortex patch for the remainder), ECMO removed at 13 days old, and ultimately spent 7 weeks in the NNICU. He came home still dealing with pulmonary hypertension, delayed gastric emptying, and severe reflux, but was breathing room air and bottle feeding! Ray has been hospitalized 4 times since coming home; 1st at 6 months old due to bronchiolitis caused by the common cold virus, 2nd and 3rd for an upper GI bleed caused by a milk protein sensitivity (eosinophilic gastritis which is not necessarily related to CDH), and 4th was at 13 months old for small bowel obstruction caused by scar tissue from his repair surgery. He is now completely med free! Looking at him, you wouldn't even know all that he's gone through...
You can read his story on FB, "Baby Ray James Heal - Our CDH Journey"
https://www.facebook.com/groups/5944...=group_comment