O Warrior's March Support Group
We hope to see you on Sunday, March 2nd at 2:00PM EST for our monthly support group: Ask an O Mom! Please join us as we host Carly, Kelly, and Liana, all moms to amazing O Warriors. Our moms will each share about their own omphalocele journey and tell us how their O warriors (all 4.5-5 years old) are doing today.
As always, everyone from the omphalocele community is welcome (parents of new O babies, experienced parents with older O children, pregnant mothers and expectant family members, grandparents, friends, adult omphalocele survivors) and you are all an important part of our group.
Please use the link below to join us on the day of the event: https://zoom.us/j/98263661528?pwd=MzVNUTRVUi9HV2dvalBJdUhhdzNWUT09
Meet our panelists!
Carly
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 just had her muscle closure surgery and hernia surgery in December 2024.
Kelly
Kelly is mom to Aubrey who is 4.5 years old and resides in Pennsylvania. She is a Special Education Consultant for students in Autistic Support classrooms. Aubrey's Omphalocele was originally detected at 10 weeks during an ultrasound after other complications in early pregnancy. Aubrey was born at CHOP in Philadelphia at 38 weeks and had her full closure surgery at 8 days old. Aubrey spent about a month in the NICU and was diagnosed with Hyperinsulinism, as well as a clinical diagnosis of Beckwith Wiedemann Syndrome. She continues to have a speech delay, but is otherwise a thriving, sweet little girl!
Liana
Liana is Board Certified Behavior Analyst (BCBA) from Boston, MA. After dealing with infertility and then a miscarriage, she found out at her 12 week scan that her baby was diagnosed with an Omphalocele. After the initial shock and unsolicited advice from her regular OB and other staff, her care was transferred to MFM and Boston Children’s Hospital. She was carefully watched throughout her pregnancy. At 38 weeks, 4 days she had a scheduled C-section and her miracle baby Avery John was born with a giant Omphalocele. After 8 weeks in the hospital, Avery went home and was treated with paint and wait. At 6 months he had his closure surgery and was given a G-tube. Avery is now 4.5 years old and is thriving. He’s a kind, super sassy but sweet little boy and couldn't imagine life without him! Since his birth, Liana has been an advocate for not only babies with Omphaloceles but also for moms to get the help (therapy) they need with medically complex babies.