O Warrior's May Support Group

​We hope to see you on Sunday, May 4th at 2:00PM EST for our monthly support group: Ask an O Survivor! We will be hosting 3 adults, Liza, April, and Susan, all born with an omphalocele. They will share their stories and medical journeys with us, and will also be available to answer your questions about your own O warriors. Link to join is below!

​​​​​​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:

​April

​April was born in June 1976 with a full omphalocele. All of her organs were affected. She was born in Vancouver General Hospital, Vancouver, BC. Her mom was 21 1/2 and delivered April vaginally. April's mother only found out that April had an omphalocele because her doctor told her to get checked out using Kamloops' (the city nearest where her family lives) newest ultrasound, because no one knew when her due date was. April was in the hospital for 22 months, mostly because she had severe breathing issues. She had her closure surgery at 4 years old.

​

​Susan

​Susan was born on Friday, October 13th, 1950 with what was then called a huge omphalocele (with everything in it!). She was born at full term and came out crying, was operated on 2 hours later (though other family members were planning her funeral), and was kept in a bassinet in the nurses' office for over 2 months until her release. Her first few years were rough at times, especially regarding feeding and eating, but she played and had just as much fun as her cousins and friends. Her life pretty much followed everyone else's, except for being hospitalized more than most people. Susan thought she was the only person born with an omphalocele until her early 60's when she read an article online about a little boy in Texas born with an omphalocele, and through the wonders of the internet, she was able to contact his mother who told her about a Yahoo email group called Mothers of Omphalocele. She wrote in and was accepted. Susan has especially appreciated finding the MOO group and connecting with other adults - she has "found her people."

​

​Liza

​Liza was born with an "unheard of" O in 1981, in Waconia, MN. She was not thought to make it and was rushed to Children’s Minneapolis. At Children’s full closure surgery was immediately done, although she didn’t have the proper skin closure and her skin was stretched very thin. She has no belly button (they tried), and has scars from breast bone to pelvic bone. 

​Liza lived most of her childhood hospitalized and struggled just being a kid. School was hard catching up, but also feeling different and being bullied from elementary through high school. In her adult life, things started to spiral medically out of control. She had 8 more abdominal surgeries due to adhesions. Two of the surgeries adhesions constricted each of ovaries a year apart from each other and each had to be removed. Due to lack of skin when closure was done at birth and continual surgeries, Liza’s intestines are now herniating. She also deals with bacterial overgrowth in her intestines due to them moving so slow. 

​After getting married Liza and her partner tried to adopt but it never worked out and they gave up. In 2019, Liza was introduced to a woman who wanted to talk with her because she was pregnant with an O baby. Shortly after, the woman asked if Liza would adopt her little girl, who was later born with Gastroschisis. 

​Liza never left her daughter’s side from that day. Her daughter spent 6 months in the hospital and many of those days in the NICU.

​Liza has used the resilience and love for life her parents taught her to find happiness in the hard times. She is now teaching those same things to her daughter. “There are always hard days, but there are many more beautiful moments we can make in life,” and Liza is reminded of that every day when she looks at her daughter.