Hi everyone! Huge thanks to Cherubs and Dawn for asking me to do this. First a little background above and beyond the bio that has already been posted. My son, Carter, was born at Duke with a LCDH in 2008. Long story short, he had a major defect with almost all of his abdominal organs herniated into his chest. He endured 18 days of ECMO, numerous surgeries, ultrasounds, etc and we were unable to hold him until he was 6 weeks old. When he finally had his surgery to repair his hernia, his doctors found 2 relatively normal lungs squeezed among his abdominal contents. To this day, I get teary eyed whenever I think about that.

Eventually, we came to the realization that Carter was going to survive, but was still unable to go home. Weeks turned into months and still no date set to return home. This was mostly due to significant feeding issues and severe reflux. Carter would take nothing.... ZERO.... by mouth and was hypersensitive to all sensory input due to the CDH, pulmonary hypertension, and isolation he experienced in the NICU. During this time, my wife and I found TONS of information online about how to keep CDH kids alive. But very little about how they are going to LIVE once their medical status has stabilized.

What complicates this issue is the fact that I am an Occupational Therapist. I quickly surrounded myself with articles, research, and colleagues with experience in feeding issues. During this time, I learned enough to be dangerous about feeding issues. Am I an expert? I'm not sure that there is a such thing because every one of these kids is completely different. But I hope that my experience will help other families who are enduring this stage in the CDH rollercoaster, which is ALMOST as stressful as the initial hospital/surgical process.

How's Carter today? He pulled out his NG tube shortly before his 1st birthday and we never put it back in. He is now a perfectly normal 5 year old - that somedays eats his mother and I out of house and home. He still has the occasional feeding issue and it took YEARS to overcome gagging, vomiting, and severe food preferences. It took a lot of therapy from a lot of great people - not to mention a lot of patience - but I think he has finally conquered the feeding AND the CDH monster. Not a day goes by that I don't count my blessings.

Finally, a quick word about any advice I share with you guys. It is not meant to take the place of sound medical or therapeutic advice. I only want to direct you to people that can help you. If your child will not eat normally, there are a million different reasons that could explain why. Please make sure you seek the advise of your medical team and, most importantly, a great feeding and therapy team, including Occupational, Speech, and/or Physical Therapy. After this week, feel free to contact me at ecuotr@yahoo.com or www.twitter.com/bradmyersotrl with anything else I can help with. Looking forward to meeting everyone!