Join us this week as Katie Carman shares her daughter’s story, after she was diagnosed with CDH.
Tune in to at 6:00 pm EST, July 5, 2022 to https://www.blogtalkradio.com/cdh/2022/07/05/july-5-2022-guest–katie-carman.
Listen to archives of the radio show at http://www.cdhradio.org
Katie had mother intuitions very early on that she was pregnant. She shares, “when I suspected that I was pregnant with Sofia the doctor kept telling me that I wasn’t based on blood test results. When I was six weeks pregnant, he gave me medicine to start my cycle. After nothing had happened, I took a home pregnancy test and discovered that I was pregnant. I had it confirmed at a pregnancy care center and I was twelve weeks pregnant. My doctor’s office refused to see me for prenatal care because I was twelve weeks pregnant, even though I had been seen there the whole time that I had been pregnant. I had to go to the Health Department for prenatal care.”
As any new mom, Katie was very excited for first ultrasound and to see her baby for the first time. Katie shares, “my first ultrasound was at 18 weeks. They immediately saw that her intestinal contents were in her chest. They tried to persuade me to fly to Atlanta, GA, to have my daughter aborted. They tried to convince me that if she survived, she would have serious medical problems with no quality of life.”
Katie and her husband began to fight for their baby girl after she was diagnosed with CDH. After Sofia was born, she was transferred to a specialty hospital. Katie shares, “she was placed in the NICU on IV fluids only. They didn’t want to feed her because her stomach might grow and suffocate her. One lung was the size of my thumbnail, and the other was almost nonexistent. She was a preemie and would need to reach four pounds before she could have surgery in the event that she would need ECMO. She was on a jet ventilator and a nitrous machine.”
After three months of IV fluids only, she finally weighed enough for surgery. Katie shares more about her NICU time, “they put her organs in place and closed the hernia with a gortex patch. She was first able to be fed after that surgery. Due to rapidly growing and gaining weight from being fed, she had reherniated. She had to have another surgery to reattach her patch to her diaphragm at five months old. She also had to have surgery to place a metal clip in her heart to close a valve that typically closes after birth. Her pulmonary hypertension kept it from closing as well as the jet ventilator. She also had two laser eye surgeries for ROP.”
After seven long months, Sofia was finally able to go home for the first time at seven months old. Sofia would be sent home on oxygen with several monitors. Katie shares, “she had various therapists who came to our home as well as a home health nurse from the time of her initial release from the NICU which continued for several years.”
During a follow-up appointment and an x-ray of her lungs, a gallstone was discovered. Katie shares, “Sofia’s gallbladder was taken out at age two due to the gallstone which was caused by the months of IV fluids. She continues to see her surgeon yearly for having her patch monitored. She also sees various other specialists. She has been diagnosed with ADHD and Autism in addition to her Restrictive Lung Disease.”