Conjoined twins face heart separation - East Valley Tribune: News

Conjoined twins face heart separation

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Posted: Saturday, January 31, 2009 6:46 pm | Updated: 2:43 am, Sat Oct 8, 2011.

Emma and Taylor Bailey pack a lot of personality into two little bodies. They laugh, take turns playing with toys and are starting to form words. And they’re never apart.

VIDEO: Two sisters, one heart

Emma and Taylor Bailey pack a lot of personality into two little bodies. They laugh, take turns playing with toys and are starting to form words. And they’re never apart.

That’s not by choice — Emma and Taylor are conjoined twins who are connected at the chest, sharing a heart and liver. They have defied the odds thus far, making it past their second birthday even though they were supposed to die at birth.

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But with a defective heart that is expected to stop pumping within a few years, their parents must make a decision on separating them. It’s a surgery that has never been successful on twins who share a heart.

Tor and Mandy Bailey, who live with their six children in Johnson Ranch just outside Queen Creek in Pinal County, have to make that surgical determination in a month. In the meantime, they’re planning a fundraiser to help their family and others who share their burden.

In 2006, the couple was thrilled to find out they would be adding twins to their brood of three children.

It was 30 minutes after getting that news that the doctor shared the rest of the story: The girls were connected at the chest, sharing a liver and a seven-chambered heart. They had little chance of surviving birth and, if they did, they would have health and developmental issues.

The Baileys decided to go ahead with the pregnancy, but didn’t expect the twins to leave the hospital.

“As parents, it was challenging to be excited because we were shopping for a coffin when most people are shopping for a crib,” Tor Bailey said.

But that expectation made it even more exciting to hear them screaming at birth, he added.

LOOKING FORWARD

Once Emma and Taylor survived the first couple of days, doctors asked if the Baileys wanted the girls to die at the hospital or at home.

They went home with hospice care.

Emma and Taylor began getting stronger, achieving normal color. They were weaned off constant oxygen after 8 or 9 months.

It was around that time the Baileys decided to stop counting down the time they had left with the girls and start enjoying their lives.

They’ve been on family vacations, taken a trip to Disneyland and played in the snow.

The Baileys have been the focus of pieces in several publications, national television shows and a recent Discovery Channel documentary.

They get all kinds of reactions when out and about, from children running over to meet them to one man at the zoo who nearly fell into an animal enclosure when he caught a glimpse, Mandy Bailey said.

“We know how much joy they bring us and all our kids bring us,” Mandy Bailey said. “But even strangers can sense the spirits they have and are touched by them.”

Their younger brother, Blake, was born nine months ago.

“Who would ever have thought that they would achieve being older sisters?” Tor Bailey said.

CHOICES AND SURGERIES

The girls have beaten the odds thus far, but Emma’s side of the heart is failing and will probably stop beating within a year or two.

The family is working with a team at Seattle Children’s Hospital, which has declined to take part in media coverage.

The Baileys said the team has successfully separated twins and are confident they can save both girls, even though they’ve never separated twins with a shared heart.

Most tests have been completed, but the Baileys are still waiting for the final OK to learn if the girls are eligible for surgery. If they are, they will have several pre-surgeries to do, including separating their liver. To complete the separation, they would both need heart transplants.

Surgery must occur within the year, before Emma’s arteries are too damaged for a transplant. If one girl isn’t eligible for the transplant, separation is off the table.

None of the 10 documented attempts to separate twins who share a heart has worked.

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

“It’s been a roller coaster. There are days when you wish someone else could make the decision for you,” Tor Bailey said. “(Surgery) could lengthen their life or it could shorten it.”

TWO SISTERS, ONE HEART

The Baileys are moving forward as if they’re going to try the separation.

That means incurring a lot of expenses for more than medical costs. Emma and Taylor must live within half an hour of the Seattle hospital once they go on the heart transplant list, meaning all or part of the family must relocate.

The Baileys also want to help other families with conjoined twins. Those joint purposes are leading them and their friends to organize a charitable run, silent auction and mini-festival called “Two Sisters, One Heart” — to be held, appropriately, on Valentine’s Day.

The couple discovered early that about 40 sets of conjoined twins are conceived each year. Ten sets make it to birth and just four typically live more than 24 hours.

“At their birth, we thought we were going to be part of that statistic,” Mandy Bailey said. “And we thought, really? On top of everything else, we have to come up with funeral costs?”

The first “Two Sisters, One Heart” will be specifically to support their family in the coming year. Subsequent events are planned to help families in similar situations.

“We’ve been the recipients over and over of people being charitable,” Mandy Bailey said. “We want to give back.”

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