Olivia Lee and her Giant Omphalocele

Hi! My name is Jordan Clark and I have a three month old daughter who was born with a rare birth defect know as a Giant Omphalocele! We have been at CHOA since she was born. A little over a month ago Olivia had open heart surgery to repair her VSD and on April 4th, she will have her second surgery for a tracheostomy. Due to her Omphalocele being the size that it is, her diaphragm is in able to inflate as it should! We have had our ups and downs here, but she is the strongest little baby I know. This experience is eye opening, challenging, and draining; but also, it’s rewarding and making us stronger everyday.

Our journey has only just begun, once she gets the tracheostomy we will eventually be trained to manage and live day to day with the trach. Then we will eventually go home! Once we’re home, Olivia will be on a home ventilator and slowing work to ween off the oxygen. Her omphalocele repair is expected to happen when she is 3-4 years old which will involve several surgeries to put everything back into there rightful place then will follow up with around 6 months of bed rest.

I will try to keep this updated day to day with Olivia’s progress! She is a beautiful girl and I am truly blessed to be her mother and would do absolutely anything and everything to provide for her whatever she needs! Her day to day will be a little different then what we originally expected but there’s nothing I would do for her!