We look forward to seeing you at 2:00pm EST on Sunday, January 8th for our monthly support group. We are excited to host four guests this month! Mallory Byrne, MSN, APRN, CPCP-AC, CPN, is a certified pediatric acute care nurse practitioner who works at the Children’s Hospital of Philadelphia (CHOP) in the Beckwith-Wiedemann and Overgrowth Syndrome clinic. She will share her insight and experience working with O babies who also have a diagnosis of Beckwith-Wiedemann Syndrome (BWS). Mallory will be joined by three O Warrior moms, all of whom are ready to share their own stories and answer your questions about having an O baby with a diagnosis of BWS. 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!
Mallory Byrne
Mallory Byrne, MSN, APRN, CPCP-AC, CPN, is a Certified Pediatric acute care nurse practitioner who works at the Children’s Hospital of Philadelphia in the Beckwith-Wiedemann and Overgrowth Syndrome clinic. She received her Bachelor of Science in nursing from the University of Pittsburgh. After completing her undergraduate degree, she worked for several years in a transitional NICU in Pittsburgh where she found her passion for supporting families of children with medical complexities. She then moved to Philadelphia where she earned her Masters of Science in nursing from the University of Pennsylvania. She worked as a bedside nurse at The Children’s Hospital of Philadelphia on the Progressive Care Unit, a specialty unit for children who are supported with medical technology, during and after graduate school. She has provided direct nursing care to many patients with omphaloceles during her time as a bedside nurse. She now cares for children with omphaloceles and Beckwith-Wiedemann Syndrome.
Panelists:
Darcie Olson
Darcie’s daughter, Anastasia, was diagnosed with an omphalocele during the 20-week anatomy scan and with BWS while in the NICU. At the time, learning Anastasia had BWS as well as the O felt like the worst-case scenario. Although BWS brought many challenges to Anastasia's first years of life, the family found that as Anastasia gets older, her medical challenges continue to settle, and the areas that don’t have become part of the normal in their family. Anastasia has strength beyond her years, shows empathy that many adults cannot, and is a daily reminder that life is a gift worth cherishing. Darcie works as a Medical Social Worker and is passionate about raising disability, difference, and rare disorder awareness in her community.
Kelly Parker
Kelly is a Special Education Teacher from Lancaster, Pennsylvania. Kelly’s daughter, Aubrey was born at CHOP in September 2020 with a small omphalocele. She was repaired at 8 days old, but the team had concerns about her glucose levels, which brought another diagnosis of hyperinsulinism. Aubrey was tested for Beckwith-Wiedemann Syndrome and her genetic testing was negative. However, with her omphalocele and hyperinsulinism, she was given a clinical diagnosis of BWS. Aubrey goes through the BWS protocol for tumor checks every 3 months and is seen in clinic at CHOP once a year. Aubrey is an energetic, loving 2 year old who has overcome so many obstacles. She recently started gymnastics and loves her family's goldendoodle, Annie. She is a warrior!
Jade Frederick
Jade’s son, Youseif Blair, was born with an omphalocele. The omphalocele led doctors to do genetic testing and found he also had Beckwith-Wiedemann syndrome. At only four days old Youseif Blair had to undergo an omphalocele repair. Since leaving the NICU Youseif Blair has had to get routine ultrasound scans every 12 weeks and blood work every six weeks. He is now a year old and a warrior in all means of the word. He is the brightest, sweetest, and most resilient little boy you’d ever meet. Since Jade got the diagnosis for her son she has been a strong advocate for BWS and children born with omphaloceles.