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Hailey isn’t your average two-year-old. This giggly, playful kid was born with her liver outside of her belly – a rare defect of the abdominal wall called omphalocele.

Francine and Frank Mares and their toddler daughter (now seven) moved to Rapid City from sunny California in 2012.

“We moved here because we wanted a change. Rapid City is a quiet town and a better environment to raise our children in,” Francine explained. Three short years later, the couple rejoiced when they discovered Francine was pregnant again.

In the beginning, the pregnancy was easy, like her first, and she enjoyed it. Their happiness turned to worry at a routine 13-week ultrasound. Their nurse noticed that her umbilical cord was bigger than usual. If it didn’t shrink, it was likely that their baby would have complications. The couple nervously waited, and their fears were confirmed at the follow up ultrasound two weeks later – their daughter had omphalocele.

The CDC reports that this defect affects 1 out of every 5,300 babies born in the US. Other infants with this rare defect can be born with intestines or other organs outside of the belly. The organs are covered in a thin, nearly transparent sac.

“The doctor told us that babies with omphalocele usually have other birth defects and that once she was born, she would likely have complications and die. Every week up to delivery I had to have an ultrasound,” Francine remembered. “They told me if she survived, she’d have a long hospital stay and have health problems for the rest of her life.”

Fragile First Weeks

At 37 weeks, Hailey was born in mid-November at the Sanford Children’s Hospital in Sioux Falls. After being delivered, the baby was rushed away before Francine could hold her, because Hailey was having difficulty breathing. She was put on a ventilator and was so small that there wasn’t enough skin to cover her stomach. At one week old, surgeons operated on her and put her liver back in, covered her with a mesh cover, and sewed up her stomach.

“Shortly after she was born, I started getting emotional when I went from my room to her room because I saw her on all the machines. I couldn’t pick her up. I was scared because I had no idea what was happening next. Her first surgery was three hours long and I was so nervous that I couldn’t eat or sleep. We hadn’t bonded yet, and I was afraid of losing my baby,” said Francine.

After her surgery, Hailey started experiencing terrifying complications. She started swelling up, she had a small infection in her stomach where the wound site was, she ended up with pneumonia and had reached the max settings on her ventilator, and, to top it off, her incision ended up reopening in two spots. She was so swollen that doctors couldn’t close the incision, so they covered it with a skin graft until it healed on its own. Francine was told that if she didn’t get better soon, they’d have to transfer her to another hospital and do a lung bypass. With Hailey being so little and so sick, she most likely wouldn’t have made it.

 

Christmas Miracles & Homecoming

Against the odds, Hailey started improving in mid-December. She could hold food down, her swelling went down, and doctors took her off the ventilator.

“The first time I got to hold her was Christmas eve. It was just me and her in my arms,” Francine recalled fondly. “Not being able to hold her like I did with my first daughter was hard.”

In the first week of January, she was out of the woods, and Hailey was transferred back home to Rapid City. The Mares were finally able to sleep in their own beds and focus on raising their family, but Francine is forever grateful to the caring staff at Sanford Children’s Hospital.

“They have amazing staff there that I grew really close to. They took really good care of us and I am grateful to them.”

Today, Francine stays home and takes care of her two kids, which is a full-time job. From eye doctors, genetic counselors, pediatric surgeons, and more, Hailey has appointments three times a week.

“That’s what we do almost every day,” Francine said with a laugh. When she has time, she takes her daughters to the park, the mall, or just a drive around the Black Hills.

“I know we have a long road ahead of us, development wise. But we’re taking it day by day.”

By Kelsey Sinclair

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