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I am so sorry your son has been diagnosed with CDH. 15% of cases to this day still go undiagnosed.
Have you asked the doctors to consult with other doctors in the states or other countries? It can be very scary to have the doctors not experienced in CDH and not knowing what to do. Has your son had his CDH repair surgery?
Praying for strength for Caleb.
Tracy - mom to Ian, LCDH diagnosed at birth, 4/3/04. Ian was born at 36 weeks, spent 53 1/2 days in NICU, 7 days on ECMO, surgery was on day 5, 29 days on a vent, 23 days was an oscillating vent, 546 days on oxygen. Inguinal right and left hernias and undescended left testicle surgeries were done on day 48. Currently has heart related medical issues and exercise induced asthma, but is one happy, happy boy!! Also mom to Cole - 13, Shane - 9, and Toby - 4. CHERUBS Parent Advisory Board Member and Co-Chair, Volunteer Co-Coordinator, and Wyoming State Representative.
email: tmeats@cherubs-cdh.org
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