June 26, 2012 > 'By spreading the word, we can save babies'
'By spreading the word, we can save babies'
By Annie Yu
"I see a little bit of a weight difference... let me see you again in four weeks."
Most people would have agreed to the doctor's words and come back in four weeks for another check-up, but Fremont resident Kannan Dorairaj was suspicious. "Hold on, what are you checking for? What are you talking about?" he asked. "When there is a weight difference, there may be a chance of Twin-to-Twin Transfusion Syndrome," was the reply.
When Dorairaj found out that Twin-to-Twin Transfusion Syndrome (TTTS) could be life-threatening to his wife Priya's expected twin daughters, he refused to wait four weeks; he pressed his doctor for more information. "[He's] saying that I could lose a baby. There must be something I can do," Dorairaj said. "After I pushed [the doctor] so much, he referred me to an experimental surgery at UCSF."
TTTS, a completely random and non-hereditary syndrome, only affects monochorionic identical twins - identical twins that share one placenta. According to the TTTS Foundation, most identical twins are monochorionic, and of these about 15 percent develop TTTS. Twin fetuses affected by TTTS have connected blood vessels within the shared placenta, which causes blood to be passed from a "donor" twin to a "recipient" twin. The donor may die from lack of blood and nutrients while the recipient may have heart failure from excess blood.
Laser fetal surgery separates the connected blood vessels with a success rate of up to 80%, according to Texas Children's Hospital. However, 80 to 90 percent of untreated TTTS that occurs before the 24th week of pregnancy, results in the death of one or both twins - and Dorairaj's girls were at 22 weeks development when diagnosed. Therefore, it is crucial for parents expecting identical twins to be especially alert.
"We knew by the fifth week [of pregnancy] that they were identical twins, but nobody told us we should be monitoring the babies," Dorairaj said. "They should have been monitored every week." Even after they were diagnosed, the doctor offered no information on the available treatment until pressured to do so.
The couple fought for their twin daughters but lost them on June 16, 2011, only 16 days after being diagnosed with TTTS. Heartbroken and in pain, Dorairaj decided he had to do something to raise awareness of TTTS, especially among expectant parents of identical twins. That same day, Dorairaj created the Aarna and Aanya Foundation, named after his twin girls.
Saturday, June 16 marked the one year anniversary of the passing of Dorairaj's twin girls. The Aarna and Aanya Foundation held its inauguration that day at Lake Elizabeth with the introduction of new board members. Dorairaj's five-year-old son Amit cut the ribbon and led the foundation supporters in a walk around the lake.
Last year, Dorairaj would tell Amit, every day, all about how he was soon going to have two new sisters. Following the devastating news, Dorairaj told Amit that they had lost the babies.
"Why did you lose them? Where are they?" the then four-year-old Amit would ask. When October rolled around, a confused Amit would again raise his questions. "You said they were coming in October right? Why don't you go bring them from the hospital?"
"He remembered them and he kept asking about them," Dorairaj said. "That was really tough."
To raise awareness about TTTS, Dorairaj's first goal for the foundation is to prepare a TTTS informational pamphlet to place in every gynecologist's office. The foundation is also planning to establish a medical board to guide others and provide financial aid in the future for couples with twin fetuses struggling with TTTS.
Through the Aarna and Aanya Foundation, Dorairaj hopes to prevent other parents from suffering the same loss due to a lack of knowledge about TTTS. "I had to watch them die, to sit there with my wife and see their pulses go down," Dorairaj recalled. "But throughout the pain, the one thing that kept coming back to me was that there wasn't enough information out there... there's something I can do."
"That's our logo," public relations officer Sivakumar Ponnuswam added. "By spreading the word, we can save babies." The foundation is holding a 5k run at Quarry Lakes on Oct. 27, the approximate anniversary of Aarna and Aanya's due date. For more information about the Aarna and Aanya Foundation, please visit www.pinkdoves.com or email firstname.lastname@example.org.