Join us this week as Heather Kerbow shares her son’s story, after he was diagnosed with CDH several weeks before he was born.
Tune in to at 6:00 pm EST, June 28, 2022 to https://www.blogtalkradio.com/cdh/2022/06/27/june-14-2022-guest–heather-kerbow.
Listen to archives of the radio show at http://www.cdhradio.org
Heather had an uncomplicated pregnancy until she reached 29 weeks. Up to this point, her son’s CDH had not been discovered. Heather shares, “I kept having back-to-back preterm labor scares and no one could figure out why. At our 30-week growth scan the tech “saw something next to his heart” and we were sent to MFM.”
But before she could get into the maternal-fetal medicine specialist, Heather would go into preterm labor again at 33 weeks and more tests lead them to finding out why. Heather shares, “our precious Robert had CDH, and my cervix was shortening by the day because of high fluid levels. He entered the world just two weeks later at 35 weeks and 3 days. We had no idea the severity because I have severe idiopathic Gastroparesis controlled by a gastric pacemaker therefore, I could have no MRI.” With the no ability to do the MRI without severe risk to mom and the baby, they didn’t know for sure how severe Robert’s CDH would be.
Nothing could have prepared Heather and Paul for the NICU journey with Robert. Heather shares, “he initially was doing very well for a 35-week CDH preemie despite having a grade 1 intraventricular hemorrhage (IVH). He was repaired on day seven of life and we thought we were out of the woods because he started doing great. But then just five short days later, he pulmonary hemorrhaged on us and ECMO was not an option.” Tune into the radio show to hear about how Robert showed his strength and continued to fight during many dark days.
Heather shares, “our NICU doctors and nurses fought for Robert and got him through his darkest days. They were true angels through every other setback Robert had and when the day came for discharge they celebrated just as hard as his Dad and I did.” After 111 days in the NICU, Robert would be discharged to home.
Bringing Robert home was a very emotional day for Heather and her husband. She shares, “he came home on a home ventilator via RAM cannula to give him CPAP with oxygen bled in. Four days after coming home we found out he had COVID, and he was immediately put back in the ICU where he nearly lost his life the first night. We’ve had four hospital stays including the one with COVID since the January NICU discharge. We are now off the CPAP during the day and just on oxygen and on the CPAP with oxygen at night. He is starting to learn to eat by mouth and is meeting new milestones every day.”
Robert is a fighter, tune into his story on the CDH radio show at www.cdhradio.org to hear more about Robert’s journey with CDH.