Shannon Newby joins us this week on the CDH Radio Show as she shares her son’s journey after he was diagnosed with CDH.
Tune in to at 6:00pm EST, March 8, 2022, to https://www.blogtalkradio.com/cdh/2022/03/08/march-8-2022-guest–shannon-newby..
Listen to archives of the radio show at http://www.cdhradio.org.
We sat down with Shannon, and she shares how her pregnancy with Nathan went, “my pregnancy was a shock. I had experienced 17 years of infertility when I learned I was pregnant with Nathan. At 14 weeks we learned Nathan had a high probability of being born with Trisomy 21. We had frequent scans and it was noted that he had epi focal focus in his abdomen area and no test revealed a reason. It was unusual but there was no explanation. I was hospitalized at 31 weeks gestational, and Nathan was born at 34 weeks. He was in fetal distress and had stopped growing. I did not get a prenatal diagnosis of CDH. That would come later.”
Nathan struggled with various medical issues after he was born, despite being born with Down’s Syndrome, his mom knew something else was going on. She shares, “Nathan spent a month in the NICU. He struggled with being weaned off oxygen and they weren’t sure why. Nathan had difficulty eating and growing. He was tube fed. After a month they felt he would be able to come home but he continued to struggle at home.”
Shannon continued to question Nathan’s symptoms after taking her precious boy home. She shares, “his pediatrician ordered some test to see if there was an issue that had been missed and when we went in for an upper GI series the radiology team immediately started excitedly whispering. We left and as I was walking in my door at home our pediatrician called to see if we were still at the hospital because they had found a rare discovery and wanted to confirm. We were referred to pediatric surgery.”
Ultimately, Nathan was diagnosed with a Morgagni CDH. Shannon explains, “the surgeon explained he would need a repair, and this was serious. Nathan had a Morgagni CDH. He would have surgery for repair and a gtube placed. His surgery resulted in an additional 3 surgeries within 3 months. So much happened in a short time that it was just survival mode. I later had a break down when he was home from his repair and realized how sick my child really was and had been.”
Nathan’s CDH discovery and repairs were not the end of his struggle. Shannon shares, “Nathan’s recovery from his surgical repair seemed like a distant memory with only yearly checkups to be sure his repair was still intact. And then he stopped growing. He lost all his hair. His thyroid stopped functioning. He would undergo many tests and finally he was diagnosed with Crohn’s disease.” He was quite sick and needed to be on immune suppressant therapist. He has been diagnosed with multiple auto immune disorders.
Nathan’s Crohn’s disease has been very hard on him. Shannon goes on to share, “we are working to keep his disease under control. He is a very happy little boy who loves watching for the weekly garage truck, he waves to the mail lady, and loves sharing cookies with his little brother Nicholas every afternoon. Nathan has a great deal of medical trauma and often struggles with doctors’ appointments and procedures. Our goal is to give him the best life possible. Nathan deserves everything and he is endured more in six years than most adults will in their entire life. He will be on immune suppressant therapy for the rest of his life if no cure is found for Crohn’s. He will have yearly test to be sure his repair is holding. And despite all of this he will steal the heart of every person he meets.”
Tune in tonight to the CDH Radio Show to hear more about Nathan’s journey, what lead to his CDH discovery and more about his battle with Crohn’s disease. In addition, she shares how Nathan was such an inspiration to her, it led her to adopt six more children from the Ukraine, all being born with Down Syndrome.
If you are interested in sharing your CDH story, visit https://cdhi.org/shareyourstory/.