Ask O Moms!
We hope to see you at 2:00pm EDT on Sunday, October 6th for our monthly support group! Please join us as we host a panel of moms who have children (currently ages 5-16) who were born with an omphalocele. Our moms will share their children's journeys, as well as their own experiences with the diagnosis, and of course answer your questions!
Meet our panel!
CARLY is the mother of a beautiful 5 year old Omphalocele Warrior named Mackenzie. Carly has worked in television production for over 20 years with credits including ER, West Wing, and MLB Network. Upon Mackenzie’s diagnosis, Carly shifted gears to focus on her medical needs. Carly now teaches TV Production and spends much of her time navigating a complicated medical baby. Mackenzie’s pediatrician has been quoted in saying “Mackenzie is the healthiest sick child you will ever meet.” Mackenzie is the light of her parents' lives. She is scheduled for muscle closure surgery and hernia surgery in December 2024.
ERIN is a Senior Consultant who lives in Omaha, NE with her two sons, J who is 17 and Cairo who is 10. Around 13 weeks gestation, baby Cairo was diagnosed with an Omphalocele that contained his liver, partial stomach, and bowel. He was born at 38 weeks via c-section with a PDA (a heart defect) and giant O. He spent months back and forth between home and the hospital due to feeding issues, a collapsed lung, bilateral inguinal hernias, slow gastric emptying, failure to thrive, blood transfusions, and other medical needs. He underwent repair surgery early at 6 months of age due to his ongoing feeding issues so that a G button could be placed. The surgery was a success, and he had the G button until age 5 when he was able to eat fully by mouth and maintain a healthy weight. Cairo is now 10 years old and, while still considered “fragile,” he continues to define the word warrior and overcomes every obstacle thrown his way.
NIKI is a dedicated stay-at-home mom and a successful real estate investor in Philadelphia, Pennsylvania. As a mother of four, Niki's life is a beautiful blend of nurturing her two biological children and her adopted niece and nephew. Her journey has been marked by resilience, especially as her oldest son, now 16, is a Pentalogy of Cantrell survivor. Before her son's diagnosis, Niki was passionate about working in hospitals and had taken several college courses to further her medical education. However, the emotional toll of her son's medical challenges made it difficult to continue in that environment. This led her to discover a new passion in real estate, a field that allows her the flexibility to work from home and be present for her children. Niki's family is her greatest joy and priority. They are a close-knit and supportive unit, deeply involved in sports and various activities. Alongside her four kids, Niki shares her home with her husband, two dogs and two cats, adding even more love and energy to their bustling household. Niki's story is one of unwavering love, adaptability, and the pursuit of passions that align with her family's needs.
