A year ago, Kim Boyette faced a mother’s worst nightmare.
She was 19 weeks pregnant with her identical twins, Kourtney and Kaitlyn, when she learned they were diagnosed with twin-to-twin transfusion syndrome — a condition in which the shared placenta contains abnormal blood vessels that connect the umbilical cord and circulations of the twins. In most cases, TTTS is fatal to both babies.
The diagnosis left Boyette with only three choices: Terminate one of the babies; remove fluid; or undergo high-risk laser surgery in attempt to save both.
Just two weeks later, Boyette lay awake on an operating table at University of Miami Jackson Memorial Hospital as she watched the laser surgery via a camera feed.
Fifteen weeks later — on April 10, 2012 — she welcomed Kourtney and Kaitlyn to the world.
“I remember breathing for the first time,” Boyette said. “An overwhelming sigh of relief and a great dose of humility followed.”
One year later, the Boyettes will celebrate the twins’ first birthday with a barbecue dinner to benefit the Twin to Twin Transfusion Syndrome Foundation, an Ohio-based nonprofit that provides educational, emotional and financial support to families, medical professionals and other caregivers before, during and after a TTTS diagnosis.
The dinner will take place from 4 p.m. to 7 p.m. April 13, at Hillsborough County Cattlemen’s Building, 6404 C.R. 39, Plant City.
“I think I should reopen that door, relive that diagnosis,” Boyette said. “As painful as it is, I want to give back.”
DIAGNOSIS
When Boyette found out she was going to have twins, she was thrilled. Her husband, James, was an identical twin, and Kim spent the early days of her pregnancy planning for their arrival and researching facts.
During her Googling, she discovered TTTS.
“I was too excited and just wanted to enjoy being pregnant with the twins,” Kim remembers. “It said it was rare. So I thought, ‘That could never happen to me.’”
Twins with TTTS share abnormal blood vessels, which cause one twin, the recipient, to receive too much blood flow and nutrients while preventing the other twin, the donor, from receiving enough.
But at 18 weeks, she went in for her first level-two sonogram and received bittersweet news: The twins, Kourtney and Kaitlyn, were identical. However, they also faced the possibility of having TTTS.
One week later, they were diagnosed with TTTS. Kaitlyn, the recipient, was facing heart failure, and Kourtney, the donor, was anemic and facing kidney failure. The babies were given a 5% chance of survival without intervention.
During their life-saving surgery, doctors used a laser to permanently cut off blood flow in the bad vessel connections. With the surgery, the survival rate for one of the twins from went 5% to 90%; and to 75% for both. But the babies weren’t in the clear yet. They still had to hit certain milestones.
“First we had to make it to 24 weeks to even have viable babies that could survive,” Kim says. “Next, we had to make it 28 weeks to make it out of the ‘severe’ premature range. Our last milestone was 32 weeks. Once we met that, the doctors just watched in amazement.”
The babies were born at 36 weeks and four days on April 10, 2012.
GIVING BACK
As the twins’ birthday approached, the Boyettes decided the only way to celebrate was to use their experience to help other parents also facing a TTTS diagnosis.
During her pregnancy, Kim had connected with other mothers of TTTS twins. Some were not as lucky as her. Some had lost children or had babies who are on a strict medication regimen.
“About four months after they were born, I really struggled,” Kim remembers. “It was such a big thing how lucky we were. (I was) feeling grateful that they had made it and guilty for the same reason.”
The TTTS Foundation was started in 1989, by Mary Slaman-Forsythe, a mother of TTTS twins. Both Boyette and Slaman-Forsythe want to raise awareness on TTTS. Often, deaths from TTTS are labeled only as miscarriages. Therefore, the statistics regarding TTTS are inaccurate.
Contact Amber Jurgensen at ajurgensen@plantcityobserver.com.
IF YOU GO
BBQ Dinner for TTTS
WHEN: 4 to 7 p.m. April 13
WHERE: Hillsborough County Cattlemen’s Building, 6404 C.R. 39, Plant City
COST: $8 adults; $4 children. Dinners will only be pre-sold.
DONATIONS: Donations also can be made at tttsfoundation.org/conference/?boyettetwins.
CONTACT: Kim, (813) 478-0722
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