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Tigard mother works to raise awareness of deadly disease

TIMES PHOTO: JONATHAN HOUSE - Adrianne Butero with her son Calogero. The Tigard mother is raising awareness of Twin-to-Twin Infusion Syndrome, a deadly disease that targets identical twins.In January, Adrianne Butero sat in her hospital bed, cradling her newborn son in her arms and planning a funeral.

Butero had just given birth to twins, Calogero and Dominic, but she’d lost Dominic to a rare condition that kills thousands of identical twins each year.

Twin-to-Twin Transfusion Syndrome attacks identical twins in the womb. Also known as Feto-Fetal Transfusion Syndrome, the disease targets twins who share a placenta.

Identical twins that share a placenta also share blood circulation. Blood passes from one twin to the other. TTTS harms both twins, transfering blood disproportionately from one twin to another, causing decreased blood volume and slowing development in one twin and heart failure in the other.

There is no cure, and only a handful of surgeons in the world are trained in surgical techniques to address it.

About 4,500 sets of identical twins are diagnosed with the disease each year, according to the Twin-To-Twin Transfusion Syndrome Foundation, based in Ohio. The disease is usually fatal to at least one of the twins.

“I don’t want this to be a pity party for me,” Butero said. “I just want things to change.”

Dec. 7 is international awareness day Dec. 7 is international awareness day for the disease.

Butero is raising money for the TTTS Foundation through Jan. 13 on the crowdsourcing website GoFundMe.com.

“You don’t have to give money. Many people are just lighting a candle at 5:15 p.m.,” said Butero, a special education teacher in the Beaverton School District. In the window of Butero’s Tigard condo hangs a handmade paper wreath in memory of her son. “The main thing is raising awareness.”

Butero said she has met many people, including medical professionals, who have never heard of the disease.

“I want to do everything I can to help another mother avoid the devastation my family has faced,” she said.

‘I didn’t know this disease existed’

When Butero found out she was pregnant with identical twins, she was ecstatic.

In a rare coincidence, Butero’s sister also has identical twins, as does her best friend.

“I couldn’t wait to share that bond with her,” Butero said of her sister.

But in the 12th week of her pregnancy, she began to have pains. She called her doctor’s office and was told that it was natural.

“I was feeling swollen and bloated,” Butero said. “I called my doctor but she wasn’t there. The doctor I spoke with said it sounded normal and that they’d see me in two weeks. Two weeks later, I was diagnosed with stage-two TTTS.”

Without surgery, she was told she would likely lose both babies. On Christmas day of 2014, Butero was rushed to Seattle for a fetal laser surgery on her placenta.

“I didn’t even know this disease existed,” she said. “It was very scary. I’m Googling things the night before, trying to find out information. You’re scared enough about the surgery, but then to not have information about it, it’s scary.”

It’s a difficult surgery. Only eight doctors in the world are able to perform it, Butero said.

The surgery was a success, but the disease proved too stressful for Dominic, who died the next week.

It’s a devastating and heartbreaking story, but Butero said she’s one of the lucky ones.

Today, 10-month-old Calogero is happy and healthy, groping for his mother as he stands on shaky legs in their Tigard condo.

“He lived through the impossible, I need to remember that.”

TIMES PHOTO: JONATHAN HOUSE - Adrianne Butero plays with her son Calogero in their Tigard living room.

‘I don’t want the disease to beat me’

The TTTS Foundation was started more than two decades ago, providing emotional and financial support for families affected by the disease.

The Foundation paid for Dominic’s funeral and helped with medical bills for the family, Butero said.

More importantly, Foundation members gave emotional support.

“They walked me through it,” Butero said. “They said, ‘Let me know each day if you want to talk.’”

On Mother’s Day, the Foundation sent Butero a card, signed with her son’s name.

“That was such an amazing, thoughtful thing for them to do,” she said. “I never thought I’d get one of those from Dominic, and I did.”

Butero said that since Dominic’s death, she’s gotten more involved in spreading the word about the disease.

“It helps me feel like I’ve gotten my life back,” she said. “I don’t want the disease to beat me.”

It’s challenging work, she said.

“It’d be much easier if I just moved forward and didn’t think about it,” she said. “I definitely hit a dark spot, but I think working with the Foundation is part of what has keeps me going.”

“I will forever be a mother of twins,” Butero added. “I just don’t get to hold them both at the same time.”


By Miles Vance
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email: MVance@CommNewspapers.com
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