A six-month-old girl who was born with a rare disorder – organs outside her body – celebrated her first Christmas with her joyful parents.
Hannah and Simon Cox were overjoyed when they found out they were expecting their first child. However, their excitement was short-lived when an ultrasound after three months of pregnancy revealed that their unborn baby had a giant omphalocele, a serious birth defect that causes major organs to grow outside the child’s body.
They were told that about one in five babies with the condition does not survive. But despite the odds, Hannah and Simon remained hopeful and held on to their faith in God as they navigated the difficult and often overwhelming journey before giving birth.
The Coxes chose the name Elsie for their daughter, not only because it is a family name but because it means “God is perfection.” And as they awaited Elsie’s birth, they held on to their faith and let God guide them through the uncertainty and fear that came with such a complex pregnancy.
Hannah described her pregnancy as “very overwhelming and at times very scary,” as they were told Elsie may have problems with her lungs, heart, and spine, as well as her liver, stomach, and intestines growing outside her body.
But despite the many challenges they faced, Hannah remained determined to continue with the pregnancy and learn as much as she could about Elsie’s condition.
Elsie’s birth was particularly complicated because the doctors had to take special care to protect the membrane surrounding her external organs. James Aridas of the Center for Maternal and Fetal Medicine, who performed the C-section, said it was the biggest omphalocele he had ever seen and that it was “delicate and challenging.”
But despite the risks, everything went according to plan, and Hannah was able to hear a faint cry when Elsie was born at the Mater Mothers’ Hospital in south Brisbane.
After birth, Elsie was taken to the recovery room and then to the neonatal intensive care unit (NICU), where she was put on a ventilator. It was a difficult and emotional time for the Coxes, but they remained hopeful and prayed for Elsie’s health and well-being.
As Elsie grew, Hannah and Simon watched in awe as their “miracle” baby continued to defy the odds and thrive. As Elsie grew, the organs that were once outside her body were drawn back into her abdomen by gravity. Skin also grew over the omphalocele, further protecting and surrounding the organs inside her body.
Elsie will eventually need surgery to move the remaining intestines back into her abdomen. Despite this, it continues to progress and develop.
Today, Elsie is a happy and healthy six-month-old baby, and Hannah and Simon are grateful for the love and support of their family, friends, and church community as they celebrate their first Christmas with their “miracle” daughter. As Hannah reflects on the journey that brought them to this point, she is filled with gratitude and deep confidence in God’s plan for their family.
“We had to go with him and let him guide her and help her, and we’re just going to do whatever we can,” Hannah says. “We have a church community, and we have the Christian faith. It doesn’t make anything easy, but it’s definitely a place of refuge and help.”
For parents facing the possibility of a child being born with organs outside the body, Hannah’s story is a testament to the power of faith in God.
As she and Simon celebrate their first Christmas with Elsie, they can look back on the past year with pride and joy, knowing that they overcame incredible odds and that their “miracle” daughter is a testament to the love and grace of God.