Perseverance is legacy of conjoined E.V. twins - East Valley Tribune: Queen Creek & San Tan Valley

Perseverance is legacy of conjoined E.V. twins

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Posted: Friday, August 13, 2010 2:11 pm | Updated: 4:26 pm, Wed Dec 3, 2014.

During their nearly four years of life, Emma and Taylor Bailey went through the same quarrels all siblings have — conflict that was exacerbated by the rare phenomenon they shared.

As the San Tan Valley conjoined twins beat the odds, they sometimes beat on each other.

“They would take out their frustrations on each others’ faces,” family friend Ginni Christiansen said. “Then, they would hug each other and be best friends again.”

That fighting spirit, occasionally evident during playtime, came to define the girls, who died on Tuesday from heart-surgery complications in Seattle, a month before their fourth birthday. Those who knew Emma and Taylor say that perseverance — about 35 percent of conjoined twins survive one day, and the Baileys were expected to die not long after birth — is their legacy.

“After the girls were born, my wife and I went out to buy them little dresses to be buried in,” their grandfather, Don Lybbert of Lynnwood, Wash., said. “They became their christening dresses. Not only did they beat the odds with courage, but they did it with grace. They were happy, cuddly girls right up to the end.”

Connected at the chest and lower abdomen, Emma and Taylor shared a common heart and liver. The surgery was one of several procedures the girls underwent to strengthen the heart prior to separation surgery, which was to take place later this year.

“We all knew that as their bodies grew, the heart would not be able to support them,” said local actor Gary Kimble, who organized fundraisers for the girls through the Broadway Palm Dinner Theater in Mesa. “When we did one campaign for them, they were 2 years old. Already, they had beaten the odds.

“The fact that they lived to be almost 4 years old is pretty extraordinary. I think what they’ll be remembered for is how others responded to them, how inspiring they were.”

The twins are survived by their parents, Tor and Mandy, and siblings Paige, Drew, Cole and Blake.

Mandy Bailey politely declined an interview request, referring questions to Lybbert, her father.

“I think all of us knew that they would not be with us that long,” Lybbert said. “We knew the plan (to separate them) was fragile and had much risk. But given the condition of the heart, it was their best shot. … I don’t think we have any regrets.”

As Emma’s side of the heart weakened, doctors determined that the strain would result in their deaths if the twins were not separated.

However, of 10 previous documented attempts to separate twins that share a heart, none was successful.

“That’s our choices,” Mandy Bailey told the Tribune in 2009. “We either deal with them passing away in a few years or we separate them.”

Said Tor Bailey in ’09: “It’s been a roller coaster. There are days you wish somebody else could make the decision for you. (Surgery) could lengthen their life or it could shorten it.”

As the twins outlived their initial dire prognosis, the Bailey family and those close to them settled into a routine of loving, doting on and experiencing joy through them.

That kind of affection never wavered, despite the fact that — given the circumstances — any medical news regarding Emma and Taylor was likely not going to be good.

“I don’t think anybody ever walked on eggshells,” Christiansen said. “To us, they were a miracle, and whatever happened to them was God’s plan. We knew they were alive for a reason, and we didn’t treat them any different. They were just two little twin girls.”

Less than two weeks ago, the twins visited Christiansen, who provided hospice care.

“They were telling me what they wanted for their birthday,” Christiansen said. “They loved to color, too.”

Lybbert was with the girls as they received anesthesia prior to the surgery, which went awry when the pulmonary artery burst.

“I gave them their last kisses, as they fell asleep,” he said. “I’ll take that memory with me forever.”

Viewing is scheduled for 6 to 8 p.m. Aug. 20 at the Church of Jesus Christ of Latter-day Saints, 29419 N. Desert Willow Blvd., Queen Creek. The funeral service is at 1 p.m. on Aug. 21 at the church, and the twins will be laid to rest afterward at Mariposa Gardens, 400 S. Power Road, Mesa.

In lieu of flowers, the Bailey family is requesting donations for funeral arrangements, which can be made by visiting http://emmaandtaylorbailey.blogspot.com. Kimble said that the Broadway Palm Dinner Theater is considering organizing another fundraiser.

“They are a family of unshakable faith,” Kimble said. “Mandy told me that she realized that the girls belonged to God and were entrusted to her care. She said, ‘They are ambassadors of love. They inspire love in other people. I’m simply their host and caretaker while they are here, doing their ambassadorship.’

“Then I watched as the entire community rallied around them. The outpouring of love that was inspired by the twins was really a phenomenal thing.”

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