When: 4 to 7 p.m. Saturday Where: Hillsborough County Cattleman's Building, 6404 County Road 39, Plant City Includes: $8 barbeque chicken dinner for adults (pre-sold only, call in advance to purchase) and $4 hot dog kid's meal; live music, raffle, cake auction, children's activities, celebration of life for survivors and memorial service for victims. All proceeds go to TTTS Foundation. Information: Call (813) 478-0722 or visit the Facebook page at TTTS BBQ Dinner. To learn more about the disease, go to www.tttsfoundation.org
If things had been different, Kim Boyette would be planning a birthday party for her year-old twin daughters this weekend.
Instead, she's hosting a community event to raise money and awareness for the little-known disease that nearly killed them.
Saturday's fundraiser in Plant City – which will include food, live music, activities for kids and stories of other survivors – will also remember victims of Twin to Twin Transfusion Syndrome. Boyette calls them “little angels” and plans to release about 70 butterflies in their memory.
“I'm so very grateful and so blessed that we were one of the lucky ones,” says the Lithia mother of four. “But I'm so aware that not everyone has a happy ending. If there's a purpose for what I went through, maybe it was to help others.”
When she and her husband, James, a Pasco County firefighter, learned they were pregnant with twins in September 2011, they were thrilled to be adding to their family, which included a daughter and a son. But that joy turned to fear two months later when they got the news that their babies had Twin to Twin Transfusion Syndrome (TTTS).
The disease occurs when the shared placenta in an identical twin pregnancy contains abnormal blood vessels that connect the twins' umbilical cords and circulation. This causes the recipient twin to receive too much blood, amniotic fluid and nutrients, while the “donor” gives too much away and becomes anemic.
One out of five identical twin pregnancies with a shared placenta will be affected by this disease. It is usually fatal to both babies, who typically die of heart failure while in the womb.
“It's like your whole world caves in,” Boyette, 33, says of getting the news. “We knew we wanted to fight for the girls, but there are so many unanswered questions.”
The Boyettes were given three options. The first was “selective reduction” – a clinical term for aborting one of the fetuses. As Catholics, that was not a choice for them.
They also could have an “amino-reduction,” where fluid could be removed from the recipient's sac, temporarily taking pressure off of the heart. In that case, one or both of the babies, if they survived, likely would have had neurological or physical disabilities.
The final option was laser ablation surgery, in which a laser is inserted into the womb and blood flow is permanently cut off in those vessels where the connection between the babies was bad. The procedure is performed by a fetal surgeon in only about a dozen clinics in the country.
Boyette had several factors in her favor. Tests showed she was a candidate for the surgery. Ruben Quintero, who is one of the top specialists in the U.S. and practices at the University of Miami Jackson Memorial Hospital, could work her into his schedule a few days before Christmas. And after initially turning her down, her insurance company agreed to pay for the procedure.
When she was 21 weeks pregnant, Boyette had the surgery, remaining awake while her babies were put to sleep. She watched live pictures through a camera that was sent through a hollow tube placed in her womb. Quintero found five bad connections and sealed them off, upping the survival chance from 5 percent to 90 percent that one baby would live, and 75 percent that both would live.
Boyette would spend the next several months on bed rest at home. With no guarantee about the health of her daughters, she depended on her faith to help her face the unknown. On April 10, 2012, at 36 weeks and four days, Kourtney arrived, weighing 5 pounds, 6 ounces. Six-pound Kaitlyn followed. Three days later, they were discharged from Brandon Regional Hospital and sent home.
“They are healthy and thriving. Without that surgery, I know that wouldn't be the outcome,” Boyette says.
She credits the TTTS Foundation for giving her emotional, educational and spiritual support throughout the ordeal. The Ohio-based nonprofit was founded in 1989 by Mary Slaman-Forsythe, who lost one of her twins to TTTS and vowed to raise awareness about the disease in her son's memory.
Proceeds from Boyette's fundraiser will go to the foundation's Circle of Care program, which helps parents of TTTS babies with costs such as airfare and lodging for travel connected to medical treatment, or for headstones and memorial costs when babies don't survive.
The nonprofit – the only one dedicated solely to TTTS – maintains a website that lists the 15 questions every mother pregnant with twins needs to ask her doctor along with the latest medical information. It also provides counseling over the phone and a message board.
“Kim could have gone on with her life, putting TTTS behind her,” Slaman-Forsythe said in a phone interview. “But that's not her nature. She's a loving, compassionate person with a very loving spirit. We are extremely grateful to her.”
Boyette admits she was in a “very dark and gloomy place” in those months after she learned about her babies having TTTS. Then after they were born healthy, she had terrible survivor's guilt, since she had become acquainted with so many mothers who didn't have her good fortune.
Though several local sponsors are helping with the benefit, including Winn-Dixie, Chili's and Sonic Drive-In, she and her husband are paying for many of the expenses out of their own pocket. The event concludes with a butterfly release, in honor of victims who did not survive.
Boyette can't think of a better way to celebrate Kourtney and Kaitlyn's birthday.
“They don't need another present. They've got everything they need,” she says. “I want their story to be a story of hope. That's a present I want to give back, to whoever needs it.”