The Farrell family of South Paris lost their 4-day-old daughter, Guinevere, on Sept. 29. Sean and Sara have two sons, Connor, 4, and Luke, 8, and Guinevere’s twin sister, Zoey-Marie, 3 months. Daryn Slover/Sun Journal Buy this Photo

PARIS — Sara Farrell has a slight hiccup with the adage ‘God doesn’t give you more than you can handle.’

When Sara and Sean Farrell, both of Paris, found out they were expecting twins, they had a lot to wrap their heads around. But one of their twins was diagnosed with a rare condition called OEIS, or cloacal exstrophy, a condition that affects the lower abdominal wall structures of infants in utero.

According to Sean, one in 400,000 infants diagnosed with the syndrome survive birth.

“When we found out that one of the girls was going to have serious health issues, we were trying to navigate that. It seemed like every time we went in for an ultrasound, the doctors were telling us everything that could go wrong,” said Sara.

While Sara said the doctors didn’t explicitly tell the couple what to do, the odds weren’t great for the girl’s survival, and the term “selective termination” was brought up. The Farrells decided that wasn’t part of their plan, and decided to carry both developing fetuses through the nine-month process.

“Over time, she kept pushing on. Here we were thinking at the time the baby was going to pass away in my wife’s uterus,” said Sean.

Guinevere beat the odds and was born, albeit prematurely and with serious health conditions. Zoey-Marie was born healthy.

Guinevere was kept alive by both a feeding tube and a breathing tube. One of her lungs wasn’t formed completely, and she was on two or three machines to help keep her comfortable until she could undergo surgery.

On the fourth day, the Farrells had to make an unimaginable decision; how much longer to keep Guinevere alive. Before surgery, she passed away. The parents’ pain seemed unbearable.

It was then that Sara felt God had given her more than she could handle. But, in time, she came to rely more and more on the power of her faith to help get through the days ahead.

“He gives you more than you can handle so that you can rely on him. That’s where I’ve been at, when people say ‘God’s not giving you more than you can handle.’ He has. I couldn’t handle it on my own,” said Sara.

The community at the Pleasant Street Baptist Church, where Sara and Sean both worship, stepped up to the plate to provide support to the couple both before and after birth.

Before birth, Sean, an active member of the National Guard, was deployed to training in California. Church members came to help Sarah at home, and members from the National Guard also visited and supported her.

Shortly before the couple left for Brigham and Women’s Hospital in Boston, where Sara was going to give birth, the couple met with their pastor and prayed.

Sara went into labor weeks early, on Sept. 23, and gave birth two days later, a scary enough situation even without the looming worst-case scenario.

“She was only 32 weeks. We were all stressed out and very scared; not only do we have Gwen, a baby with a lot of problems, but we have (that) she’s going to be born three pounds prematurely. … I didn’t want to risk also losing Zoey. We had a lot on our plate to decide,” said Sean.

Both girls were delivered safely and transferred to the NICU at Boston Children’s Hospital across the street.

“Once the girls were born, it was a whirlwind. I don’t know how we would have navigated all of it without our faith and the support from our church and family,” said Sara.

A lot of people tell the Farrells that they’re strong. But Sean doesn’t really see it that way; he said he’s weak, but his faith helps give him the strength to get through the days, months, weeks and years after the loss of Gwen.

“I get that a lot, we’re strong. I always tell people; we’re not strong, we’re actually really weak. Our faith is strong, God is strong within us, and he helps us push through. He gave us each other to really lean on,” Sean said. “At times, people think it makes you weaker, dealing with stress, but it brought me and my wife closer. Having Zoey — she’s almost eight pounds now and doing great — having her keeps our minds in the right place.”

During the few days Gwen was alive, the prayers poured in from the church. When Gwen passed away on Sept. 29, it was a Sunday and the Farrells were watching the Sunday service in Mechanic Falls on their phones. The Farrells’ situation dominated the discussion.

“They took probably an hour to pray for us and talk about us. The actual service itself was five or 10 minutes,” said Sara. “They were supporting us and loving us from three hours away.”

In the days after, grief was still present. Back home, a few weeks after, the Farrell’s had a funeral service for Guinevere with a casket tiny enough for Sean to place on his forearm. After the whirlwind, that act made the grief stick.

But the Farrells take joy in what they have.

“I’m able to find joy in my daughter Zoey, the fact that I still have her. I have my two boys. I was able to look past the pain and see just how our story and situation was able to bring people together, to show them that, yes, we go through hard things, but with God and with support, we’re able to manage it,” said Sara.

“It doesn’t make it hurt less, but it’s easier knowing at some point, we’ll be able to be with her again. … It’s all his at this point,” she said of God.


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