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Posted on April 07 2014
Yesterday, April 6...my son Connor would've been 20 years old. We didn't have a party or go out to dinner to celebrate. My husband and I visited the cemetery where he was laid to rest after 6 1/2 months of battling the complications from his diaphragmatic hernia. I'd never heard of CDH until an ultrasound during my 6 month check up picked up on something abnormal. We were assured by specialists that this is a treatable anomaly ...surgery to repair the diaphragm and oxygen for about one year while the damaged lung grew. We had no reason to think the end result would be anything different. Boy...were we in for a surprise. After being on the Extracorporeal Membrane Oxygenation (ECMO) machine for two weeks, surgery was successful and his lung did grow....sadly they grew large cystic adenomatoid malformations. Now we have two diagnosis that are rarely seen together....he was our 1 in 1 million baby..and not in a good way. Multiple surgeries were done to remove damaged lung tissue, and yet we still had hope for him because technically, you can survive and have quality of life with one lung. Let's clear that up....you need to have at least one healthy lung. Unfortunately, Connor was struck with pneumonia and sepsis several times that further damaged his "bad" lung and totally compromised his "good" lung. He just couldn't keep his little body oxygenated enough to sustain him, even with the assist of the ventilator. We lost him at 6 1/2 months. He never came home to us, living his short little life at Rady Children's Hospital in San Diego. His neonatologist was our hero, she brought us through hell and back. We became very close to her and Connor's care team of nurses...without their care for him and us, we wouldn't have made it through this ordeal. I think about him every day.....I feel a little sad on Mother's Day knowing I am missing one of my children. Wondering what he would look like now or what would he be doing...college, marriage, etc. I have two wonderful daughters that I cherish, but I will forever have a hole in my heart. It's been 20 years and yet it feels like yesterday.