Ok, here goes.... I sent my letter to the reporter. I was told it did not have to be long. I had so much to say but I just needed to get her interested so here it is.
Hi Carrie,
I recently met one of your producers. Meghan Fisher. I shared with her the story of my 8 month old son, Baer. She thought you may be interested in doing a story on us, so here goes. He is our fourth child. We have a 17, 16 and 12 year old. Yes, the same marriage. We decided to start all over again. He was born via c section after a wonderful pregnancy, I had 4 sonograms since this was my fourth c- section. Nothing out of the ordinary showed up. My last one was 2 weeks before he was born. After delivery, he was late to cry. I asked my husband what was wrong, thinking he may need suctioning. I am a nurse and EMT and my husband has been a paramedic for almost 20 years. They game him oxygen and then he had a weak cry. I got to see him but I could see in his eyes that he was struggling. They told me that they were taking him to the newborn nursery but may have to move him the NICU. My husband and the nurse carried him down to the nursery. By the time they arrived, he was turning blue. He had no breath sounds on the left side of his chest. They thought maybe a collapsed lung. He was rushed to NICU and intubated. I was in recovery not knowing what was going on but knowing he was not well. The neonatologist, pediatric surgeon, and my husband came in to tell me that he had a condition known as a Congenital Diaphragmatic Hernia. I had never heard of this! We were informed that he had a hole in his diaphragm and his small intestines and possibly other organs were up to his clavicle. They were not sure if any,how much lungs he had, how much heart he had or if it even functioned properly. They gave him a 30% chance to live at this point. We were told that he would possibly need to be flown to Columbia or Atlanta for a heart lung bypass machine known as ECMO because there is not one in the Upstate. He was sedated and intubated so his heart and lungs could rest. Most babies are diagnosed with this in utero. If so he would have been delivered at MUSC. As luck would have it, there was a doctor who had only been at GHS for a couple of months and Baer's birth defect was his specialty. By day 3 Baer was holding his own and it was determined he could stay in Greenville and had the repair to his diaphragm here. He spent 28 days in NICU and is now a happy healthy 8 month old against all odds. The diaphragm forms in the 8th week of pregnancy and for some reason in CDH there is a hole or weakening in it. This allows organs to protrude compressing the lungs and heart or not allowing them to grow at all. All CDH babies are different, with different degrees of illnesses. CDH is a little know birth defect that affects approximately 1600 babies a year. That is more that spina bifida and cystic fibrosis, yet the public at large knows virtually nothing about it. 50% of the babies with Congenital Diaphragmatic Hernia's do not survive. There are possibly more than that but due to fetal demise in utero and early termination by parents who chose to let go early because prognosis for their baby is so grim, researchers think there are more cases than are reported. The cause of CDH is unknown. It is thought to be genetic with a possible environmental link. That is the hard part. You are told it is nothing you or your partner did, but you have no clue why. There is no why to stop this horrible birth defect without a cause. It is first reported in journals as early as the 1500's. Most families are participating in one of the few research studies, but funding is limited. As soon as Baer came home I began a quest to get in touch with other parents of CDH babies, both survivors and non-survivors. I needed support, I needed to be part of a group who was looking for a solution and I needed to be part of a group who be advocates for families with children born with this birth defect. I found CHERUBS on the internet. It is a nonprofit advocacy, support and research group based out of North Carolina. This was stared almost a decade ago by a single mom of a CDH child who lost his battle at age 6. The organization has members with chapters all over the world because CDH is politically correct and does not discriminate. I want to spread awareness so a cause and prevention or cure can be found. I want to be the voice of all the babies who died so young before they had a chance to speak for themselves.
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