We hope to see you at 2:00pm EST on Sunday, June 4th for our monthly support group! Please join us as we host four adults, each of whom were born with an omphalocele. They range in age from 37 to 73 and 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
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 37 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.
Susan Hantz-West
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." In July she will celebrate her 42nd wedding anniversary, and her son turned 37 in February.
Christopher King
Christopher is a member of the adult O-survivor community. Born in 1961 with a giant-O of the liver, he weighed less than 4lbs at birth. Chris overcame what were even then shockingly low odds for O-baby survival. Later, his birth odyssey was recounted as part of a cover story about ‘New Miracles of Baby Surgery’ published in Good Housekeeping magazine. After recovering from the involved surgical interventions of his birth, Chris grew up with the typically distended abdomen of giant O-children. Despite various intermittent health concerns, he managed a reasonably active childhood. He got married to an amazing lady named Carmen, raised two marvelous kids with her, and remained very active and highly productive throughout the years. Now, he keeps as active as he can, feels it’s his duty to enlighten other O-survivors regarding the importance of not letting physicians disregard the significance of O-adults’ “idiosyncratic anatomies.” He is now retired from working in higher education where he finished out his career as a District Director of Instructional Technology and Instructor of e-Learning. He spends his time writing and enjoying time with his family.
