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Parents of conjoined twins face tough decision

Tor and Mandy Bailey have already faced the most difficult question of all. That came early in her pregnancy two years ago when they were told that the twins she was carrying were conjoined and were advised to abort the pregnancy. But sooner or later, they'll have an even tougher decision to make.
/ Source: TODAY contributor

Tor and Mandy Bailey have already faced the most difficult question of all. That came early in her pregnancy two years ago, when they were told that the twins she was carrying were conjoined and were advised to abort the pregnancy.

“Doom and gloom,” Tor told TODAY’s Al Roker in recalling that consultation with their doctor. “He let us know that the percentages were very low that we could even make it through birth, and then re-emphasized that even after they were born, that there was even higher risk that they wouldn’t survive past 24 hours.”

The Baileys, who have three other children, Paige, 9, Drew, 7, and Cole, 5, decided to go through with the pregnancy. Seventeen months ago, Taylor and Emma were born, joined from the navel to the collarbone and sharing a chest cavity, liver and heart. Despite the dire odds they faced, the girls, who spent the interview fussing on their mother’s lap, are doing fine.

“Nothing is an immediate issue,” said Mandy Bailey, who is pregnant with the couple’s sixth child, a boy due in May. “Their health is stable.”

But there is a long-term issue — whether to attempt to separate the girls with all the risks that attend such complicated surgery, or to allow them to grow up and live a conjoined life. The decision is not urgent, but it is pressing; the older the girls get, the more difficult and riskier the surgery becomes.

On the other hand, because they share a heart, to have them separated now would mean both would have to be sustained by artificial hearts while waiting for donor organs.

The Queen Creek, Ariz., family has medical insurance that will pay for the surgery. But it would require that Mandy and the children move out of state to be near one of the few medical centers in the country capable of such surgery, while Tor stays at home to work. The commuting and housing expenses would rapidly add up during the years of follow-up surgeries.

It must be, said Roker, an agonizing decision to have to make.

“We talk about this all the time,” Tor Bailey replied. “We want to do what’s best for them. Unfortunately, we haven’t received a lot of clear communication from the doctors in terms of what are the possibilities. We’re going through a lot of testing.”

The parents said that after deciding not to abort the pregnancy, they’re at peace with whatever decision they ultimately make.

“We’re kind of deciding as we go, and we’re perfectly happy if the decision is they can’t be separated,” Tor Bailey said. “We’re perfectly happy how they are right now, and we’re prepared to do whatever we need to adjust and accommodate for that lifestyle.”

They said they’ve really had to learn on the fly how to deal with the rare condition. They’ve set up a blog online to tell their story and to raise funds to be used if they decide to go through with surgery to separate the girls. If they decide to let the girls grow up as they are, they said, the money will be given to a nonprofit charity.

They also have to deal with the reality that at any time the girls could develop complications that could necessitate immediate emergency surgery. They’re taking that, too, day by day.

“If something came up that we needed to make an emergency decision, we have some options,” Mandy said. “For now, we’re just going to wait it out a little bit.”

Sharing their storyIn the meantime, they’ve gone public with their story to give hope — and information — to others.

“There’s not a lot of medical information,” said Mandy Bailey, who has spent much time “trying to filter through the information, trying to filter through the discouragement of being pregnant with this kind of pregnancy, hoping for the best for your children.”

They have connected with a few families of conjoined twins, and, Mandy said, “I’ve been finding that the families are really encouraging and have a lot of strength to offer.”
Noting that Mandy is expecting, Roker asked how the older children are taking all of this.

“They’re so good,” said Mandy Bailey. “They love it. My daughter just wishes she were getting a cat instead of another brother.”