A little girl doctors said might die just celebrated her first Christmas, after defying all the odds against her.
Hannah and Simon Cox, from the Sunshine Coast in Australia, received some terrifying news at their 12-week ultrasound. Their preborn baby had a “giant” omphalocele, a birth defect in which some organs extend out of the abdomen through the belly button. The Coxes’ daughter, Elsie, had her stomach, liver, and intestines growing outside her body. Doctors initially warned the couple that Elsie might not survive.
But instead, she is now one year old and thriving.
Doctors opted to perform a C-section at 39 weeks to ensure that the sac holding Elsie’s organs would not rupture during labor. Dr. James Aridas led a team of 10 to ensure her safe arrival. “We needed to be careful with Elsie to not put pressure on her abdomen or the umbilical cord during the delivery,” he told news.com.au. “This was definitely the biggest omphalocele I have seen in my career. It was a very delicate, challenging delivery – but everything went to plan.”
In the meantime, the Coxes clung to their faith to help them through the difficult ordeal.
“Elsie means God is perfection,” Hannah told the Australian Broadcasting Corporation. “We just like the meaning because the whole time we just clung to God and knew that he was the author of the story. We needed to go with him and let him guide and help her and we’ll just do everything we could. We have a church community, and we have a Christian faith. It doesn’t make anything easy, but it definitely is a place of refuge and help.”
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In addition to her organs growing outside of her body, little Elsie also had some issues with her lungs and spine. And the entire time, Hannah said she was going to give Elsie the chance to live.
“It was a rollercoaster,” Hannah said. “It was that constant battle of trying to not get too anxious, but also not too excited, because you have this fear that these things could happen that they keep telling you could go wrong. However, we were still trying to cherish the pregnancy and not let it be completely terrifying and trying to celebrate the good parts and trying to take it day by day instead of taking a bigger picture. I was very determined to continue with the pregnancy and learn about Elsie’s condition.”
After Elsie was born, doctors decided it was too dangerous to remove the omphalocele, so instead, they wrapped it with a special dressing to promote skin growth. “It was tricky,” Hannah said. “Having her organs on the outside meant that she had a big bulge from her stomach area. You couldn’t really press her to your chest. You’re holding her in a cradle position. We couldn’t really hold her close, which was hard because it’s not as nice and intimate as you would like but obviously, all we wanted to do was just what we could and hold her how we could.”
The mortality rate for babies with such a large omphalocele is one in five, but Elsie proved to be a fighter, improving greatly within just a matter of days. And as she has grown, her organs have begun going back into her body where they belong. Skin is now growing over them and just a small bit of intestine still protrudes. She’ll eventually need surgery for that, but for now, is doing well.
“Her tummy is pretty much flat now; she has a little bump which looks like a hernia, but it’s actually just her intestines still moving down. Her body still needs some time to heal,” Hannah said. “What we have gone through this year has felt like a lifetime. I look at photos and see how far Elsie has come and think ‘she’s our miracle’. It’s been a big journey and she’s worth every minute of it. We never imagined we would be home for Christmas with Elsie and sharing her with our friends and family is a precious joy.”