- Mary Slaman, 59, was diagnosed with twin-to-twin transfusion syndrome (TTTS) in 1989.
- TTTS impacts about 20% of identical twin pregnancies. One of Slaman's sons died from the disease.
Mary Slaman was 18 weeks pregnant with her twin sons when she learned they might both die.
It was 1989, and she had just been diagnosed with twin-to-twin transfusion syndrome (TTTS), a condition where twin fetuses receive unequal blood supply due to sharing a placenta. TTTS impacts about 15-20% of identical twin pregnancies.
Left untreated, the majority of fetuses with TTTS don't survive, and if one infant does, the surviving baby may have complications due to being deprived of nutrients as blood pumps to the deceased twin.
Slaman, now 59, was told by her doctors that there was no cure — all she could do was go home and get some rest. "I got into bed and I was very religiously strictly in bed," she told Insider. "They didn't see me until almost two months later."
One of her twins, whom she had named Steven, died at 26 weeks. After going through four rounds of preterm labor, Slaman finally gave birth at 36 weeks. Her other son, Matthew, survived without any long-term complications.
Furious with the lack of guidance from her doctors, Slaman decided to look for answers on her own.
"I made a promise to Matthew and Steven on the night they were born that they would be known and remembered," she said.
Within a year, she discovered Dr. Julian De Lia, an OB/GYN who pioneered a laser surgery that could have saved Steven's life. At that moment, Slaman knew she wanted to start working with De Lia to save other TTTS twins.
A potential TTTS cure existed, but Slaman hadn't been told about it
In 1983, De Lia had a patient with TTTS, and started exploring endoscopic laser surgery as a treatment option. His idea was to disrupt the vessels involved in sharing blood between the fetuses, leading to a stop in the uneven blood flow.
He conducted the first-ever laser surgery in 1988 — a year before Slaman was diagnosed with the condition. It was successful.
Had she known the surgery was an option, Slaman believes she "probably would've been the second in the world to have it."
When Slaman confronted her doctor after learning about the surgery, she said he admitted to knowing about it, but felt no obligation to tell her because it was still considered new and experimental.
Despite the conversation with her doctor, Slaman believed the surgery could have saved Steven's life. She wrote a 32-page letter to De Lia, telling him she wanted to dedicate her life to working with him.
In 1995, the TTTS Foundation launched its first website — something Slaman credits as a "huge catalyst of change" as more parents of twins learned about the surgery. Slaman and De Lia have also attended the annual Twins Days Festival in Twinsburg, Ohio to spread the word about the organization.
Laser surgery is now considered one of the best TTTS treatment options
Laser fetal surgery is now one of two medical treatment options for TTTS, and is the only one that directly treats the cause of the syndrome. There are currently about 20 centers in the US that offer the procedure.
De Lia died in 2022, but Slaman — along with Matthew and her younger sons Dillon and Logan — continue to work at the TTTS Foundation. Slaman is now the president and treasurer of the foundation, and said the non-profit provides grants to families who need the treatment but can't afford to fly to one of the centers.
"I've helped over 30,000 women, and the grief goes so deep that helping them kind of distracts from the loss for me," she said. "I just wanted to make it better for the next one than it was for me."
Slaman said it's been gratifying to see attitudes towards the surgery, and De Lia himself, change over time. In 2023, De Lia was posthumously named "one of the fathers of fetal surgery" by the American College of Obstetricians and Gynecologists.
As for her, she sees her ongoing work as fulfilling the promise she made to her sons in 1989. December 7, the day Slaman delivered Matthew and Steven, is now recognized as World TTTS Awareness Day.