Join us at 2:00pm EST on Sunday, November 5th for our monthly support group meeting! We will be welcoming a panel of parents whose O babies have more complex omphaloele-related conditions. Chasity Simon is the mother of an O baby who has Pentalogy of Cantrell (PoC), and Kasey Tolbert is the mother of an O baby who has Omphalocele-Exstrophy of Bladder-Imperforate Anus-Spinal Defects Complex (OEIS). They will be sharing about their babies’ respective journies and what their lives are like today. As always, everyone from the omphalocele community is welcome (parents of new O babies, experienced parents with older O children, pregnant mothers or expectant family members, grandparents, friends, adult omphalocele survivors) and you are all an important part of our group.
Panelists:
Kasey Tolbert
Kasey is a physical therapist in San Diego and new mom to Kian. Kian was born with Giant O (liver and bowel), complicated with exstrophy of bladder, imperforated anus, and tethered lumbar cord, also known as OEIS complex. Kian’s O was closed at 26 days old and he spent 55 days in the NICU. He progressed surprisingly well in the NICU after having 2 surgeries, and the only equipment he required coming home was his colostomy. He has another surgery on the horizon to address his other anomalies. Kian is thriving and looks like any other baby except he goes to the bathroom a little differently for now. After misdiagnoses and misinformation prenatally, Kasey is now a big advocate for getting 2nd (or 3rd, or 4th…) opinions and building the right medical team around your case.
Chasity Simon
Chasity is a Dog Trainer, Proposal Writer, the Director of Marketing for O Warrior, and Mama to Kayden, who was diagnosed with Pentalogy of Cantrell at 19 weeks pregnant. Being born with complete PoC, Kayden has a collection of five midline anomalies: an abdominal wall defect (giant omphalocele containing liver, intestines and part of his stomach), lower sternal defect (shortened sternum – you can see the bottom part of his heart beating), congenital heart malformations (two holes in his heart: ASD and VSD), missing pericardium (the thin membrane that lines the heart), and a hole in his diaphragm. Kayden spent 291 days (just over 9 months) at the Stollery Childrens Hospital in Edmonton, Alberta, Canada. His condition is so rare that he is only the second warrior the Stollery has seen in the last 20 years. When Kayden came home, he had a tracheostomy, ventilator, oxygen support, NJ feeding tube, NG venting tube, and all the necessary dressing supplies to help grow skin for his giant omphalocele. At 16 months old, he had heart surgery to close the hole in his heart. At 18 months old he had major abdominal surgery that closed the hole in his diaphragm, mended his giant omphalocele, and finally got rid of the nose tubes, as Kayden received a G-tube. Early in 2023, Kayden had successful airway surgery that allowed him to be fully decannulated. Today, Kayden is a very happy and busy three year old who loves attending school programs, sport ball, and has defied all the odds stacked against him.
