Open Support Group!

​We hope to see you at 4:00pm EDT on Sunday, November 2nd for our monthly support group!

 November Open Support Group: Just Us!

Join us for our monthly support group, but this month we're shaking things up!

Instead of our usual speaker format, we're dedicating the entire hour to open conversation, connection, and community building. This is your chance to simply relax, share stories, swap tips, offer encouragement, or just listen alongside others who truly understand the omphalocele journey.

Whether you're celebrating a milestone or navigating a tough day, this meeting is all about making space for you and forging those important bonds that make our community so strong. Come as you are, and let's spend some time together!

Who Should Join?

Everyone connected to the omphalocele experience is a valued member of the community, and we invite you to attend! This includes:

• Parents who are new to the journey or have older children.

• Expecting mothers and their family members.

• Grandparents and supportive friends.

• Adult omphalocele survivors.

Your experience, wherever you are on this path, is important!

​Ask an O Mom

​We hope to see you at 2:00pm EDT on Sunday, October 5th for our monthly support group!

 Please join us as we host Katie Simons McCarty, O mom and author, who will share about her son's omphalocele journey and her family's experience in the NICU.

​​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.

​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, international community members) and you are all an important part of our group!

​Ask an Occupational Therapist!

​We hope to see you at 2:00pm EDT on Sunday, September 7th for our monthly support group!

Please join us as we host Margaret King, OTR/L. Margaret is a pediatric occupational therapist at Baystate Medical Center in Springfield, MA. She graduated from Texas Woman’s University in 1995 with a Bachelor of Science degree in Occupational Therapy. Margaret has been working in the NICU setting for the past 20 years, both in Texas and in Massachusetts. She has also spent time as a consultant for Phillips Respironics, formally Children’s Medical Ventures, where she traveled to NICUs across the country to provide education on developmental care. When not working with precious babies and their families, she spends time with her family and plays the bagpipes.

​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, international community members) and you are all an important part of our group!

We hope to see you on Sunday, June 1st at 2:00PM EST for our monthly support group:  Ask a Developmental Specialist! We will be hosting Charla Tabet, developmental specialist, early intervention therapist, car seat technician, Early Child Mental Health Specialist, and (if that weren't enough) O survivor herself! She is excited to answer all of your questions about how to support your O baby in the early years as they learn, grow, and navigate milestones, and will be sharing her expertise in the field. 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.

Meet our Panelist!
​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 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 now! 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 child development specialist within Early Intervention. 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. Charla has since furthered her training and is also an Infant and Early Childhood Mental Health Specialist. With this new training Charla has been better able to support children and families who have or are experiencing trauma or have other social and/or emotional needs. She is happy to answer any questions about growing up with an O, children’s therapeutic needs, Early Intervention, car seat safety, or the emotional needs of parents and family members.

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.

Meet the 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. 

We hope to see you on Sunday, April 6th at 2:00PM EST for our monthly support group: Ask a Pediatric Surgeon!

We will be welcoming Dr. Stephen Fenton, a pediatric surgeon practicing at Primary Children’s Hospital in Salt Lake City, Utah. Dr. Fenton has also worked to establish the Grant Scott Bonham Fetal Center, a multidisciplinary program focused on the care of pregnant women with a prenatal diagnosis of a congenital anomaly.

​​​​​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.

Meet the Panelists!
Stephen J. Fenton, MD
​​Dr. Fenton grew up in Salt Lake City and received a Bachelor of Arts in Spanish at the University of Utah. After receiving his Doctor of Medicine from Creighton University in Omaha, Nebraska, he returned to Salt Lake City and completed his residency in General Surgery at the University of Utah School of Medicine. Following his residency, Dr. Fenton moved to San Antonio, Texas where he practiced as a General Surgeon for the United States Air Force for the next four years. During this time, he deployed on two separate occasions, serving in both Afghanistan and the Philippines under Operation Enduring Freedom. After completing his fellowship in Pediatric Surgery at the Children’s Hospital of Philadelphia, he returned to Salt Lake City to join the Division of Pediatric Surgery at the University of Utah and practices at Primary Children’s Hospital. Since 2014, Dr. Fenton has worked to establish the Grant Scott Bonham Fetal Center, a multidisciplinary program focused on the care of pregnant women with a prenatal diagnosis of a congenital anomaly. The Grant Scott Bonham Fetal Center is committed to provide integrated high-quality care to optimize the health of patients and families affected by congenital anomalies, both during pregnancy and after birth, and to improve available treatment by pioneering innovative therapies and educating future leaders.

We hope to see you at 2:00pm EST on Sunday, March 2nd for our monthly support group: Ask an O Mom!

Please join us as we host Carly, Kelly, and Liana, all O Moms to amazing little O Warriors. Our moms will each share about their own omphalocele journey and how their O warriors 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.

Meet the 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.

We hope to see you at 2:00pm EST on Sunday, February 2nd for our monthly support group: Ask a New O Mom!

Please join us as we host Ashleigh, Heather, Falecia, and Karen, all O Moms to amazing little O Warriors. Our moms will each share about their own omphalocele journey and how their O warriors 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.

Meet the Panelists!
Ashleigh
Ashleigh is mom to Audrey, who is now 18 months old. She found out at her 20 week anatomy scan that her baby had a giant O. Audrey was born at 35 weeks and spent 67 days in the NICU. She had full closure on day 8 of life using the silo method. She came home with a feeding tube, which she had for 11.5 months. Audrey is thriving and enjoying life to the fullest! Ashleigh and her family live in Canada.

Heather
Heather Hunsicker is 41 years old and has been happily married to her husband, Jason, for 14 years! She is an academic advisor for 11th grade students and works remotely for a cyber charter school based out of West Chester! She and her husband tried for 15 years to have a baby, and after 2 miscarriages they finally were blessed with their son, Oliver Flynn! He is almost a year old and was born with a giant omphalocele containing 5 organs. In March, Heather’s family will be scheduling Oliver’s closure surgery!

Falecia
Falecia is a 29 year old homesteader and mother of giant O baby Evelyn. She has been married to her devoted husband for 10 years. After a long fertility journey they were so excited to be having their wished for child. At their 20 week anatomy scan, the doctor gave them the news of their daughter’s omphalocele. The weight of the news was initially very difficult to process, but they were determined to rediscover excitement and joy. Evelyn was born with her omphalocele containing liver and bowel. At 1 week old, Evelyn’s omphalocele ruptured, putting her in critical condition with pulmonary hypertension. Evelyn had several attempts to be repaired through several methods and re-ruptured 3 times before needing to be paralyzed in order to promote healing. At 4 months old, Evelyn was extubated, and she was sent home partially repaired at 6 months old. Evelyn was getting her nutrition via NG tube until she was 10 months old. Now, at 2 years old they spend most of their days living a very uncomplicated toddler lifestyle!

Karen
Karen is the mother of a 20 month old O Warrior named Liam. She also has a 15 year old stepson named Jacob. She is a New Jersey native and resides in Pennsylvania with her husband Jon. Karen is currently at home with Liam, but she was a teacher for 15 years. Liam’s omphalocele was discovered around 20 months gestation during an anatomy scan. As many O moms have experienced, her OB suggested termination. This was devastating, especially after a miscarriage. They decided to consult CHOP in Philadelphia and were given a much more optimistic diagnosis. Liam had a giant omphalocele containing his liver. He was delivered by planned C-section at 37+5 and spent two months at CHOP. He had closure surgery at 9 months old and is thriving. He is an active boy with a loving disposition. He loves food, his stuffed animal puppies, his dog Georgie, anything with wheels, and his dada. Karen suffered from perinatal and postpartum depression. During pregnancy, her coping mechanism was to dissociate. Karen has healed after working with her therapist. Liam is her best friend and she can’t imagine life without him.

We hope to see you at 2:00pm EST on Sunday, January 5th for our monthly support group: Ask an O Dad!

Please join us as we host Alyster, Andrew, and Ryan, all O Dads to amazing O Warriors. Our dads will each share about their own omphalocele journey and how their O warriors 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.

Meet the O Dads!
Andrew is a Physical Therapist Assistant working in one of the largest hospitals in Arizona in the cardiac, neuro, and trauma ICUs. He has two children. At his wife’s 11 week scan, they discovered that their son Kenny was diagnosed with a large omphalocele, which contained his liver and intestines. Initially, early scans were ordered because doctors suspected that Andrew’s wife may be experiencing a miscarriage. However, the results were completely unexpected. Kenny was originally scheduled for a planned C-Section but unexpectedly arrived at 35.5 weeks and spent 21 days in the NICU. Due to his double inguinal hernias, Kenny’s closure surgery was performed much earlier than anticipated, at 4 months. He spent another 4 days in the hospital before being discharged. Since his closure surgery, Kenny has made remarkable progress and is now thriving. He’s almost a year old and enjoys his physical therapy appointments to help him achieve his milestones. He also loves attending daycare and radiates happiness whenever he meets someone.

Ryan’s son Elliott was born November 24, 2023 with a giant omphalocele that contained mostly his liver. Besides his omphalocele, he was born without any genetic defects or respiratory issues. After spending almost 30 days in the NICU at Baystate Medical Center in Springfield, MA. he was released to come home just shy of Christmas. Elliott is healthy and doing well today!

Alyster is the father of O baby Magnolia. At Magnolia’s 17 week anatomy scan, her parents were informed that she was diagnosed with a Giant “O”. The news was devastating and multiple doctors had strongly recommended termination. As parents, Alyster and his wife could not accept this as an option. They were also recommended to do an amniocentesis procedure to check for any abnormalities. As parents, they once again refused the testing due to the results not altering their decisions for Magnolia. In April 2023 Magnolia was born a beautiful baby girl and admitted into the NICU. Upon her 33 day stay in the NICU Magnolia underwent her first surgery for skin closure. She was also administered medication for a possible infection after surgery that ultimately caused her to lose all of her hearing. Magnolia is now 20 months old. She is strong and thriving, meeting many age-appropriate goals but still falling short on a few. Around 12 months old she also received tubes in her ears which miraculously gave her the ability to hear again. Magnolia has been an inspiration to many in this world including Alyster as her father. Her perseverance and journey has led Alyster to follow his passion of nursing and he is currently in a RN program to become a nurse. Her journey has inspired Alyster to strive to become a NICU nurse himself and have the ability to help other parents and babies during their journey of an Omphalocele.

Brandon has been happily married to his wife, Lauren, for five years. He has worked in marketing at various companies over the last nine years, and he currently serves as a Marketing Operations Manager at Bridgestone Americas. Outside of work, Brandon and his wife love to travel, spend time with friends, and attend sporting events at Western Kentucky University. His daughter, Emerson, was born on November 27, 2023, with Tetralogy of Fallot and a giant Omphalocele. From the start, she has been a little fighter, overcoming every obstacle thrown her way. Emerson spent 51 days in the Vanderbilt Children’s NICU, and was welcomed home on January 17, 2023. When she was four months old, she returned to Vanderbilt for her Tetralogy of Fallot repair surgery. This seven-hour procedure was filled with uncertainty and fear for her parents; however, she did amazingly well and is now a thriving one-year-old. Brandon and his wife continue to monitor Emerson’s Omphalocele and are working with her medical team to determine an estimated closure date.

We hope to see you at 2:00pm EST on Sunday, December 1st for our monthly support group! We are very excited to announce that our special guest this month is Katie Simons McCarty.

Katie Simons McCarty is the proud, (hockey!) mom of two sons: O Warrior, Tim (9) and PJ (6). She is a sales rep for an educational publishing company. Katie is also an active volunteer. She serves as the Co-President of the PTA at St. Augustine School in Andover, MA. Katie is also a NICU mom mentor at Beth Israel Hospital. She recently published her memoir, Infinite Miracles, about her NICU journey with Tim. Tim spent 54 days in NICU, endured 4 surgeries before he was 4 months old and had several re-admittances to the hospital, including an alarming bowel obstruction, within his first year of life. Despite the challenges she faced, Katie drew comfort, strength, and hope from her faith and discovered that even in the darkest moments, miracles can happen. Today, Katie, Tim, and PJ live in Massachusetts and you can find them at the rink!

We hope to see you at 2:00pm EST on Sunday, November 3rd for our monthly support group! We are very excited to announce that our special guest this month, Elisabeth Kraus, joins us from Growing Independent Eaters! Growing Independent Eaters (GIE) helps wean children from feeding tubes safely and successfully in their own homes, teaching parents the skills they need to be their child's own feeding therapist. Their clinical team offers support to families across the world. 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!

Elisabeth earned both her graduate and undergraduate degrees from Northwest University in Washington and has spent the last 14 years as a College Professor and professional writer. But as it does for all of us, motherhood steered her life in an unexpectedly glorious direction, and she entered the world of pediatric feeding as just that: a mom. Working with her youngest daughter to overcome the challenges that dysphagia brings, Elisabeth fell in love with so many families who fearlessly navigate a wide array of complex feeding dynamics. She loves talking “mom” with anyone who will listen, and she is continuing her teaching career as a Lecturer at Whitworth University. In her (albeit limited) spare time, you’ll find her at the park with her kiddos, settled down with a good book, or continuing her adventure as a writer who explores women’s issues as they pertain to motherhood and academia.

​Ask O Moms!

​We hope to see you at 2:00pm EDT on Sunday, October 6th for our monthly support group! Please join us as we host a panel of moms who have children (currently ages 5-16) who were born with an omphalocele. Our moms will share their children's journeys, as well as their own experiences with the diagnosis, and of course answer your questions!

Meet our panel!

​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 is scheduled for muscle closure surgery and hernia surgery in December 2024.

​

​ERIN is a Senior Consultant who lives in Omaha, NE with her two sons, J who is 17 and Cairo who is 10. Around 13 weeks gestation, baby Cairo was diagnosed with an Omphalocele that contained his liver, partial stomach, and bowel. He was born at 38 weeks via c-section with a PDA (a heart defect) and giant O. He spent months back and forth between home and the hospital due to feeding issues, a collapsed lung, bilateral inguinal hernias, slow gastric emptying, failure to thrive, blood transfusions, and other medical needs. He underwent repair surgery early at 6 months of age due to his ongoing feeding issues so that a G button could be placed. The surgery was a success, and he had the G button until age 5 when he was able to eat fully by mouth and maintain a healthy weight. Cairo is now 10 years old and, while still considered “fragile,” he continues to define the word warrior and overcomes every obstacle thrown his way.

​

​NIKI is a dedicated stay-at-home mom and a successful real estate investor in Philadelphia, Pennsylvania. As a mother of four, Niki's life is a beautiful blend of nurturing her two biological children and her adopted niece and nephew. Her journey has been marked by resilience, especially as her oldest son, now 16, is a Pentalogy of Cantrell survivor. Before her son's diagnosis, Niki was passionate about working in hospitals and had taken several college courses to further her medical education. However, the emotional toll of her son's medical challenges made it difficult to continue in that environment. This led her to discover a new passion in real estate, a field that allows her the flexibility to work from home and be present for her children. Niki's family is her greatest joy and priority. They are a close-knit and supportive unit, deeply involved in sports and various activities. Alongside her four kids, Niki shares her home with her husband, two dogs and two cats, adding even more love and energy to their bustling household. Niki's story is one of unwavering love, adaptability, and the pursuit of passions that align with her family's needs.

Ask a Neonatologist!

​We hope to see you at 2:00pm EDT on Sunday, September 1st for our monthly support group! Please join us as we host Dr. Daniela Titchiner, a double board certified physician in general pediatrics and Neonatal-Perinatal medicine, as she shares her experience working with O babies.

​Dr. Titchiner is a member of Alpha Omega Alpha Honor Medical Society and was the recipient of a Vermont Oxford Network (VON) Scholar Award. Dr. Titchiner is a native of Brazil and is fluent in Portuguese and Spanish.

​Dr. Titchiner received her medical degree at Ross University and completed residency at Stony Brook University. She completed a fellowship in neonatal-perinatal medicine at Duke University.

​Outside of work, Dr. Titchiner enjoys spending time with her husband, Matthew, and their twin girls, Evelynn and Brianna. They love to hike, explore the mountains and try new restaurants and cuisines. Dr. Titchiner loves to travel and has worked in Brazil, Israel, Uganda, and Dominica. She also enjoys playing the violin, singing and seeing Broadway musicals.

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, international community members) and you are all an important part of our group!

​Ask an Occupational Therapist!

​We hope to see you at 2:00pm EDT on Sunday, August 4th for our monthly support group!

Please join us as we host Margaret King, OTR/L. Margaret is a pediatric occupational therapist at Baystate Medical Center in Springfield, MA. She graduated from Texas Woman’s University in 1995 with a Bachelor of Science degree in Occupational Therapy. Margaret has been working in the NICU setting for the past 20 years, both in Texas and in Massachusetts. She has also spent time as a consultant for Phillips Respironics, formally Children’s Medical Ventures, where she traveled to NICUs across the country to provide education on developmental care. When not working with precious babies and their families, she spends time with her family and plays the bagpipes.

​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, international community members) and you are all an important part of our group!

We hope to see you at 2:00pm EDT on Sunday, July 7th for our monthly support group! Please join us as we host Olivia Newcomb, BLS, NRP, S.T.A.B.L.E, IDF. Olivia is a NICU nurse with experience caring for O babies and she is eager to share her professional experience with all of us. 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!

Speaker
Olivia Newcomb, NRP, S.T.A.B.L.E, IDF
Olivia is a Registered Nurse with over 5 years experience in a level 3 Neonatal Intensive Care Unit. Following graduation from her first degree in Hospitality and Tourism Management at UMass Amherst, Olivia quickly realized her true desire lay in the medical field. She returned to UMass and completed their accelerated second Bachelor’s degree program in nursing. After years working as a nanny for children birth to age 5, pediatric nursing was the end goal; she began her nursing career at the Davis NICU at Baystate Medical Center where she remains today. She is currently pursuing a certification in Care of the Extremely Low Birth Weight Neonate.

We hope to see you at 2:00pm EST on Sunday, June 2nd for our monthly support group! Please join us as we host four moms, each of whom has a child born with an omphalocele. Their babies range in age from 5 months to 1 year, and are doing amazingly well! All four moms are eager to share the stories of their O babies, especially with newly diagnosed families and families who are still early in their O journey. 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

Corin
Corin has been a full-time stay at home mom since her son Granger came home from the NICU. She was a sonographer (ultrasound tech) prior and actually found her son's large O while doing a scan. Granger was Corin's IVF miracle and born at 36 weeks with a large O containing liver and bowel, delviered early due to mom’s complications. Granger spent 117 days in the NICU which included a bowel obstruction resulting in surgery and partial repair. He is tiny but mighty, having a G-tube that he recently stopped using. Granger is now one and all boy, loves anything trucks and outdoors, climbing, and running. He didn’t let anyone stop him.

Ashleigh
Ashleigh is an elementary school teacher who lives in Newfoundland, Canada. Before finding out about her baby’s omphalocele at her 20 week ultrasound, she had never heard the word. Her baby girl, Audrey, arrived at 35 weeks via C-Section when Ashleigh's water broke. Audrey’s O container whole liver, partial stomach, and partial bowel. Audrey was fortunate to have an isolated O. Her surgeon performed the silo method for closure and she was fully repaired on day 8 of life. Audrey spent 67 days in the NICU recovering from surgery and working on feeding. She went home with an NG feeding tube. She is now 10 months old and weaning off her feeding tube slowly. Audrey is a very happy little girl who smiles at everyone and loves to have books read to her.

Christina
Christina is a sales director for a custom apparel and promotional products decorator. She lives in western Massachusetts with her husband Ryan and her O baby Elliott, who was diagnosed with an omphalocele containing his liver and part of his stomach around 12 weeks gestation. He was born full term via a scheduled c-section at 39 weeks. Elliott spent 26 days in the nicu to work on feeding and building up the stamina to tolerate full feeds. He is currently 5 months old and his surgical team hopes to complete a full repair around his first birthday. He is the sweetest, happiest, most lovable boy. He is very alert and loves to be outside!

Haley
Haley is a middle school math teacher who is used to embracing life’s daily chaos. She lives in a small town in Virginia with her husband, Caleb, and her O baby, Miller. Haley found out about a possible birth defect at 10 weeks gestation, and was given a confirmation diagnoses of an omphalocele at 13 weeks. She spent months educating herself, and educating her family and friends, on what was to come from her baby's diagnoses. Miller’s giant O was isolated and contained liver, gallbladder, and bowels. “Millie” was born full term at 39 weeks via C-section and thrived from that day on. She spent 9 days in the NICU and was sent home following the paint and wait method. Millie had full closure surgery at VCU Children’s Hospital in late February 2024, and now at 10 months old you would never know the road she endured to get where she is. She is always happy, always talking, and always on the move!

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.

Please join us at 2:00pm EDT on Sunday, April 7th for our monthly support group! We are excited to host pediatric surgeon Dr. Michael R. Phillips, MD from the University of North Carolina hospital system. Dr. Phillips will discuss his personal experience repairing omphaloceles, as well as current options available for management, treatment, and repair. 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, and adult omphalocele survivors) and you are all an important part of our group!

Michael Phillips, MD

Dr. Phillips is a surgeon-scientist with an active pediatric surgical practice and a passion for improving the quality of peri-operative care for children. Dr. Phillips attended Brigham Young University where he majored in Microbiology, then attended the Medical College of Wisconsin where he graduated with honors in research. He completed surgical residency at the University of North Carolina and a pediatric surgery fellowship at the Alfred I DuPont Hospital for Children in Wilmington, Delaware.

Dr. Phillips is currently an Assistant Professor in Surgery and Pediatrics at the University of North Carolina and works closely with the American College of Surgeons Quality Improvement Program-Pediatric (NSQIP-P). He is the lead for the medical student pediatric surgical rotation, which is a part of the core surgical clerkship for the UNC School of Medicine.

Dr. Phillips enjoys working closely with the families he treats as they encounter congenital diagnoses, medical complications, and other needs that lead them to the Children’s Specialty Clinic at UNC. He has treated and repaired numerous children with omphaloceles and plays an active role in educating families about the condition, their options for care, and planned surgical interventions.

We hope to see you at 2:00pm EST on Sunday, March 3rd for our monthly support group! We will be welcoming three O dads, Alejandro, Anthony, and Juan, who are excited to share with you about their amazing O babies and answer questions from other O dads! This particular group is dedicated to the men in our O Warriors' lives and is designed with dads, grandfathers, and/or other male caregivers in mind. Discussion will cover all things O, including initial diagnosis, their partner's pregnancy, NICU stay, repair, and life now. See you there!

Alejandro Hinojosa
Alejandro is a 25 year old Active Duty Marine Staff Sergeant, Reconnaissance Marine, and the father to Nico and Naomi. Nico was diagnosed with an omphalocele at a 20 week anatomy scan, which they later found out was categorized as a “Giant O." Nico and his parents were attached to the NICU aboard Naval Hospital Balboa in San Diego, CA for nearly 2 months until their release. Despite being told about a very strong possibility of not hearing a heartbeat at every appointment, Nico is now a normal kid with a cool scar and a story to tell. He is loved everywhere he goes and his biggest compliment is his red hair that he got from “Dada.”

Anthony Fernandez
Anthony is a veterinarian and father to two beautiful girls: Melody and Brinley.  Melody was born with a giant omphalocele containing intestines, stomach, and part of her liver.  She spent 57 days in the NICU at Nationwide Children’s Hospital in Columbus, Ohio. During that time, Melody was also diagnosed with supraventricular tachycardia or SVT (a random, very rapid heart rate).  Like most families, Anthony and his wife spent many long days and nights in the NICU with Melody, meeting with nurses, doctors, nutritionists, social services, and many others, taking in what all these people had to say, asking questions, and advocating for Melody.  Melody was managed by Dr. Olutoye (Dr. O) who has a very strong foundation and lengthy history in managing babies and children with omphalocele.  Based on lots of research and Dr. O’s recommendations, Melody was managed with the “paint and wait” method followed by her closure surgery at 14 months. Today Melody is a thriving 4 year old and wonderful big sister who loves to dance, ride horses, and all things animals. 

Juan Caballero
Juan is a peri-operative registered nurse. He is a father of a 2 year old girl Lucy. Lucy was diagnosed with a large omphalocele containing her liver and intestines at a 12 week ultrasound. She was intended to be delivered via planned C-section, but was delivered through emergent C-section after attending an MFM appointment at 36 weeks. She spent a total of 14 days in the NICU. She had closure surgery 1 year and 3 months later, spending a total of 4 days post-op in the hospital. Since closure surgery, Lucy has been able to be active, attending activaties such as gymnastics. She is still monitored yearly with her pediatric surgeon.

We hope to see you at 2:00pm EST on Sunday, February 4th for our monthly support group! We will be welcoming Dr. Stephen Fenton, a pediatric surgeon practicing at Primary Children’s Hospital in Salt Lake City, Utah. Dr. Fenton has also worked to establish the Grant Scott Bonham Fetal Center, a multidisciplinary program focused on the care of pregnant women with a prenatal diagnosis of a congenital anomaly. 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!

STEPHEN J. FENTON, MD

Dr. Fenton grew up in Salt Lake City and received a Bachelor of Arts in Spanish at the University of Utah. After receiving his Doctor of Medicine from Creighton University in Omaha, Nebraska, he returned to Salt Lake City and completed his residency in General Surgery at the University of Utah School of Medicine. Following his residency, Dr. Fenton moved to San Antonio, Texas where he practiced as a General Surgeon for the United States Air Force for the next four years. During this time, he deployed on two separate occasions, serving in both Afghanistan and the Philippines under Operation Enduring Freedom. After completing his fellowship in Pediatric Surgery at the Children’s Hospital of Philadelphia, he returned to Salt Lake City to join the Division of Pediatric Surgery at the University of Utah and practices at Primary Children’s Hospital. Since 2014, Dr. Fenton has worked to establish the Grant Scott Bonham Fetal Center, a multidisciplinary program focused on the care of pregnant women with a prenatal diagnosis of a congenital anomaly. The Grant Scott Bonham Fetal Center is committed to provide integrated high-quality care to optimize the health of patients and families affected by congenital anomalies, both during pregnancy and after birth, and to improve available treatment by pioneering innovative therapies and educating future leaders.

We hope to see you at 2:00pm EST on Sunday, January 7th for our monthly support group! We will be welcoming three O moms who will each share about their own pregnancy & delivery, their O baby's medical journey, and where they are now. 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!

Michelle Stephens
Michelle is a stay at home mom to almost 4 year old, Hannah. Hannah was born with a moderate-sized O containing bowels and partial liver along with congenital heart defects of Ventricular Septal Defect (VSD) and an overriding thoracic aorta. Her omphalocele was repaired at 3 days old. Hannah’s hospital stay was a total of 231 days which included a g-tube surgery, a VSD repair, and a tracheostomy after being diagnosed with bronchomalacia. After a year of being home, she underwent a second open heart surgery and airway reconstruction which repaired her left bronchus and helped get her off ventilator support during the day. In total, she has undergone 7 surgeries for her various complexities. Despite her challenges, she is a happy, feisty girl who just likes to be a kid. Michelle says Hannah still has a long way to go but as always, she takes it one day at a time and thanks God for her miracle baby everyday.

Faith Smith
Faith has two amazing boys. Her oldest son, Noah, age 8, was born with an omphalocele. He was diagnosed at 20 weeks with a huge omphalocele that included his liver, intestines, and part of his pancreas. She hopes that sharing Noah's story will help spread awareness about omphaloceles.

Katy Dumelle
Katy is a Product Manager at Turnitin, an educational technology company, and former math teacher. Katy lives in Oregon with her 12 month old happy, healthy O baby and husband. After getting the omphalocele diagnosis at her 20 week anatomy scan, countless MFM appointments, an all-clear amniocentesis, and a very supportive medical team, she delivered baby Parker via planned c-section at 39 weeks. Parker’s small O was fully repaired when she was just 40 hours old and she spent a total of 6 days in the NICU. Parker also has a VSD that is being monitored, but is otherwise a “normal,” fun, energetic one year old.

We hope to see you at 2:00pm EST on Sunday, December 3rd for our monthly support group! We are very excited to announce that our special guest this month, Elisabeth Kraus, joins us from Growing Independent Eaters! Growing Independent Eaters (GIE) helps wean children from feeding tubes safely and successfully in their own homes, teaching parents the skills they need to be their child's own feeding therapist. Their clinical team offers support to families across the world. 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!

Elisabeth earned both her graduate and undergraduate degrees from Northwest University in Washington and has spent the last 14 years as a College Professor and professional writer. But as it does for all of us, motherhood steered her life in an unexpectedly glorious direction, and she entered the world of pediatric feeding as just that: a mom. Working with her youngest daughter to overcome the challenges that dysphagia brings, Elisabeth fell in love with so many families who fearlessly navigate a wide array of complex feeding dynamics. She loves talking “mom” with anyone who will listen, and she is continuing her teaching career as a Lecturer at Whitworth University. In her (albeit limited) spare time, you’ll find her at the park with her kiddos, settled down with a good book, or continuing her adventure as a writer who explores women’s issues as they pertain to motherhood and academia.

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.

Join us at 2:00pm EST on Sunday, October 1st for our monthly support group meeting! We will be welcoming an entire panel of O parents who have been through the NICU experience with their O babies, and they will be sharing about the challenges that come along with living in the NICU, balancing family life, and caring for themselves, all while overseeing the care of their newborn O babies. We will also be welcoming back Wendy Hurwitz, a Licensed Mental Health Counselor and the coordinator for the Fragile Beginnings program at the Center for Early Relationship Support in Waltham, MA. Wendy’s special interest and expertise includes helping new parents connect with their newborns while navigating a challenging start to life. 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:
Wendy Hurwitz, LMHC, PMH-C
Wendy Hurwitz, LMHC, PMH-C is the coordinator for the Fragile Beginnings program at the Center for Early Relationship Support at Jewish Family & Children’s Service in Waltham, MA. Wendy’s special interest and expertise includes helping new parents to connect with their newborns while navigating a challenging start, including a stay in the Neonatal Intensive Care Unit. In addition, Wendy’s professional focus includes providing therapeutic support to parents whose perinatal mental health complications are interfering with their relationships with their babies. Wendy has advanced training in Infant-Parent Mental Health and holds a certification in Perinatal Mental Health through Postpartum Support International. She is also trained in Circle of Security-Parenting, an evidence-based parent education curriculum.

Savannah Lessei
Savannah is a stay at home mom to her son Ezekiel, who was born with a giant omphalocele containing liver and bowel. Ezekiel spent 17 days in the NICU and has his omphalocele repaired at 16 months old. He is almost 2 years olf now and is absolutely thriving! Savannah is an advocate for mother-baby bonding and attachment in the NICU and throughout infancy.

Alejandro & Riley Pfister
Alejandro and Riley are a military family that currently reside in Orange County, CA. Alejandro works for the Marine Corps and Riley is working on her masters in Mental Health Counseling while staying home with their two babies, Nico (2) & Naomi (4 months). Their oldest, Nico, was born with a giant omphalocele along with three VSD’s and pulmonary hypoplasia. He spent two months in the NICU before being sent home. He underwent a hernia repair at 6 months old and recently had full closure of his omphalocele at 22 months old. He spent about 15 months involved in both occupational and physical therapy to help keep him on track developmentally. Nico’s O journey felt as though it lasted a lifetime but in reality in went by in the blink of an eye. He is now a happy, healthy, and extremely energetic 2 year old!

Kanisha Weeks
Kanisha is 29 years old and mother to Kamira, who was diagnosed with her ompahlocele at Kanisha’s 20 week anatomy scan. Kamira’s care was immediately transferred to the local children’s hospital (University of Iowa Stead family) about 30 minutes away from where they live. Once Kanisha’s MFM confirmed the diagnosis, Kanisha underwent an amniocentesis and and Kamira’s results came back normal. Kanisha delivered at 39 weeks via C-section. Kamira spent 5 months in the NICU. She will turn 2 years old in November and is a healthy young girl. She was primarily fed by g-tube but started feeding therapy in July 2023 and is doing amazing eating by mouth. Kamira had her initial closure at a few days old and will eventually have her final closure surgery around 2-3 years old.

Join us at 2:00pm EST on Sunday, September 3rd for our monthly support group meeting! We will be welcoming Katelyn Kirk, an OR nurse who has helped many women with high-risk pregnancies prepare for their C-sections during her career. She is also the mother of an O baby and an active member in the MOO group.  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.

Katelyn Kirk, BSN, RN
Katelyn was born and raised in Maine and moved to Nashville, TN for nursing school in 2011. She graduated from Belmont University in 2013 with a Bachelor of Science in Nursing. She was hired for her first nursing job soon after on a high-risk obstetrics floor, where she worked for 6.5 years. In that time she encountered many different conditions that could make a pregnancy high-risk, including some babies diagnosed with an omphalocele. Katelyn has helped many women prepare for and recover from C-sections throughout her career. In 2022, she became pregnant with her first child and found out at 17 weeks that her baby had a giant omphalocele, including partial liver, small bowel, and stomach. In January 2023, Katelyn underwent a C-section of her own and delivered a baby girl at 37 weeks gestation.

Join us at 2:00pm EST on Sunday, August 6th for our monthly support group meeting! We will be welcoming Charla Tabet, MS, I/ECMH-C, CIMI, and Parker Cluff, President of O Warrior. Charla was born with an omphalocele and is now a certified car seat technician with specialized training in car seat safety for children with special needs. Parker manages the Car Seat Pass Down Program for O Warrior, helping families procure a Jefferson car seat or Hope car bed if families do not otherwise have access to one. 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

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, and continues to work, 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.

Parker Cluff, President of O Warrior

Parker's son Crew was born with an omphalocele in 2021. Parker saw that #owarrior was a commonly used hashtag when parents were sharing about their omphalocele kiddos, so he first started the O Warrior journey with a blog for Crew at owarrior.cluff.me. Parker is a software engineer with his undergrad in Computer Science from the University of Utah and an MBA from Brigham Young University. Being outdoors with his family and skiing Utah’s mountains are top on his list of what makes him most happy.

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.

Please join us at 2:00pm EDT on Sunday, May 7th for our monthly support group! We are excited to host pediatric surgeon Dr. Michael R. Phillips, MD from the University of North Carolina hospital system. Dr. Phillips will discuss his personal experience repairing omphaloceles, as well as current options available for management, treatment, and repair. 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, and adult omphalocele survivors) and you are all an important part of our group!

Michael Phillips, MD

Dr. Phillips is a surgeon-scientist with an active pediatric surgical practice and a passion for improving the quality of peri-operative care for children. Dr. Phillips attended Brigham Young University where he majored in Microbiology, then attended the Medical College of Wisconsin where he graduated with honors in research. He completed surgical residency at the University of North Carolina and a pediatric surgery fellowship at the Alfred I DuPont Hospital for Children in Wilmington, Delaware.

Dr. Phillips is currently an Assistant Professor in Surgery and Pediatrics at the University of North Carolina and works closely with the American College of Surgeons Quality Improvement Program-Pediatric (NSQIP-P). He is the lead for the medical student pediatric surgical rotation, which is a part of the core surgical clerkship for the UNC School of Medicine.

Dr. Phillips enjoys working closely with the families he treats as they encounter congenital diagnoses, medical complications, and other needs that lead them to the Children’s Specialty Clinic at UNC. He has treated and repaired numerous children with omphaloceles and plays an active role in educating families about the condition, their options for care, and planned surgical interventions.

We hope to see you at 2:00pm EST on Sunday, April 2nd for our monthly support group! Please join us as we discuss an incredibly important topic and one that affects us all, parental mental health while caring for a medically complex child. Our special guests are Wendy Hurwitz, Licensed Mental Health Counselor and the coordinator for the Fragile Beginnings program at the Center for Early Relationship Support in Waltham, MA, and Liana Bolen, mom to a 2.5 year old O warrior who is also an advocate for seeking out mental health services when needed. 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:
Wendy Hurwitz, LMHC, PMH-C
Wendy Hurwitz, LMHC, PMH-C is the coordinator for the Fragile Beginnings program at the Center for Early Relationship Support at Jewish Family & Children’s Service in Waltham, MA. Wendy's special interest and expertise includes helping new parents to connect with their newborns while navigating a challenging start, including a stay in the Neonatal Intensive Care Unit. In addition, Wendy's professional focus includes providing therapeutic support to parents whose perinatal mental health complications are interfering with their relationships with their babies. Wendy has advanced training in Infant-Parent Mental Health and holds a certification in Perinatal Mental Health through Postpartum Support International. She is also trained in Circle of Security-Parenting, an evidence-based parent education curriculum.

Liana Bolen
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 2.5 years old and is thriving (feeding tube was removed over a year ago!). 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.

We hope to see you at 2:00pm EST on Sunday, March 5th for our monthly support group. We are pleased to host three O dads, all of whom are excited to share their personal journey with their O baby and answer your questions. This March support group is dedicated to the men in our O Warriors' lives and is designed with dads, grandfathers and other male caregivers in mind. Discussion will cover all things O, including initial diagnosis, their partner's pregnancy, NICU stay, repair, and life now. As always, everyone from the omphalocele community is welcome and you are all an important part of our group!

Panelists:
Alejandro Hinojosa
Alejandro is a 24 year old Active Duty Marine Sgt and the father to Nico, who was diagnosed with an omphalocele at his wife’s 20 week anatomy scan. Nico and his parents were attached to the NICU abord Naval Hospital Balboa in San Diego, CA for nearly 2 months until their release. Despite being told about a very strong possibility of not hearing a heartbeat at every appointment, Nico is now communicating with his parents as well as making animal noises, and he smiles every chance he can.

Russell Bowers
When Russ heard the omphalocele diagnosis, instantly he had many questions. He had never heard that word before! He wanted to know – are we going to be okay? Understanding that medical internet searches can be limited on their optimism, he based a lot of his worry and concern-level on how his wife was processing the news. No doubt, there were many sleepless nights… which drove him to rely on his faith. In hindsight, he remembers feeling like everything was going to be okay… and many years later, it’s been a journey he would not trade for anything. In a lot of respects, it’s defined him and his family. Russ is passionate about sharing the message of hope regarding omphaloceles, and how miracles can happen. He’s always eager to share the story of his youngest, Ella, and her journey as an #owarrior. Russ works in medical sales, with an undergrad in business marketing from the University of Utah, and an MBA from Utah State University. Russ loves being with his family, running 1/2 marathons, serving in his local Boy Scout troop and cheering on the Utes!

Darcy Peltier
Darcy Peltier is an ex-bullrider/Construction Forman now located in Moncton, New Brunswick, Canada. He is also a dad to two beautiful little girls, Olivia and O warrior Hazel. Darcy and his partner Lauren's daughter Hazel was born with a small isolated Omphalacele, was delivered in Toronto, and treated at Sick Kids Hospital. After a relatively short hospital stay and few complications, Hazel is now a thriving two year old and the perfect addition to their wild family.