We hope to see you at 2:00pm EST on Sunday, May 5h for our monthly support group! Please join us as we host four adults, each of whom were born with an omphalocele. They will all share how having an O has affected their life (or maybe not so much!), including medical care and treatment they've received, any ongoing needs they have, and their best advice for any of us currently raising O babies. 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

Lisa Santana
Lisa was born with a giant O in 1958 in Long Beach, CA. She was 2 weeks late and weighed over 10 pounds, which was fortunate because she lost a few pounds in her first days. She had immediate skin-closure surgery to prevent infection and went home at 3 weeks with a big bandage that her parents had to rewrap every time she wet her diaper. At 3 months Lisa had muscle closure, which was mostly successful, and then at 6 months she had her last surgery to repair a pressure-induced inguinal hernia. Growing up, she was proud of her O scars until her teens. A flat stomach with a bellybutton is pretty much the norm among teenagers, and what teenager wants to be abnormal? Camouflage was generally successful though, and friends and family were supportive. In college, Lisa studied music and languages, and graduated with a BA in music and an MA in Linguistics. She’s married to a great guy, and has 3 grown children and one granddaughter. She makes her living teaching ESL to adults and playing the viola in several groups.

Christine Birster
Christine Birster, a giant O survivor, was born in Paris, France in 1969. She moved to Los Angeles in 1971 where her parents could not find a doctor who knew anything about omphaloceles. She never thought of herself as any different than other kids growing up in a small beach town where the normal summer attire consisted of bikinis and flip flops, except that she had a 5-inch scar running down her belly and no belly button. She is now a general manager for a beach community in San Diego and has a 23-year-old son graduating college this year in Washington D.C. She is looking forward to sharing her experiences and answering any questions about what it’s like to grow up with an omphalocele. She is happy to share the few challenges the condition brought with it, but also assure moms of future O survivors that their child’s future is bright and nothing about this condition stops them from having a beautiful life.

Jamie Lynn-Burke
Jamie is a 38 year old O survivor. She was born with her entire liver and part of her stomach in her O when she was born. She and five other babies were the first to have the "paint and wait" method used to manage their omphalocele. She had a hernia repair of her ovaries at 2 weeks old and closure surgery of the omphalocele at six months old. Jamie spent two weeks in the NICU at birth and had RSV at a few weeks old. She has a small rib cage, pulmonary hypoplasia with 68% total lung capacity, asthma, gastroparesis, short gut syndrome, malabsorption, an innocent heart murmur, an unknown autoimmune disease, ADD, and central auditory processing disorder. She has overcome a lot of obstacles, graduated high school early, went to college, and is married with two wonderful daughters. She is a stay-at-home mother at the moment, and in her spare time she loves to hike, do photography, read, cook, go camping, and is making an attempt at gardening. She hopes to be able to help mothers of children with omphaloceles, as well as support those who are survivors.

Charla Tabet, MS, I/ECMH-C, CIMI
Charla was born in 1977 with a large O. Her parents didn’t know about her O until she was born and she was immediately transferred to a large children’s hospital in Chicago where she spent 6 weeks and had 6 surgeries. She has since had 3 additional surgeries, but otherwise grew up with no medical issues connected to her O and continues to live a healthy life. She shows her scar to anyone that asks! Charla had never met anyone with an O until she was working at a children’s hospital in Chicago where an O baby was admitted for continued care and parent education. She worked then, and continues to work now, as a pediatric therapist. She is also a certified car seat technician with extra training in car seats for children with special needs. She has felt for years that she went into this work to help children and their families in the ways that she and her parents weren’t supported all those years ago. She is happy to answer any questions about growing up with an O, and car seat safety for O babies in particular.