Twin-twin Transfusion Syndrome (TTTS): Aiden and Dillon

4-year-old twins Aiden and Dillon love dinosaurs. They are bundles of energy who drive their big brother crazy (as most little brothers do!), but the whole family knows just how close they came to losing them, and appreciates every day together.

 

Aiden and Dillon Hugging Rachel and Govind Vinjamuri and their son, Logan, were a happy family of three looking to expand to four. After trying unsuccessfully for a few years, the Reading, Pa.-based family finally received happy news that they were expecting. Then, at a checkup early in the pregnancy, they received more happy news: they were having twins.

During a routine checkup at 17 weeks — the day before the family was flying out for a vacation in Disney World — their OB decided to do an ultrasound just to make sure all was well. What she found was devastating: The twins appeared to be suffering from twin-twin transfusion syndrome (TTTS), a condition in which the blood passes unequally between twins that share a placenta. Without intervention, the condition can be fatal for both twins.

“I was in complete shock,” recalls Rachel. “I couldn’t believe it.”

The OB referred the family to a specialist who confirmed the diagnosis, but who, having seen only one TTTS case in his career, suggested the family go to The Children’s Hospital of Philadelphia, a little more than an hour from their home. CHOP’s Center for Fetal Diagnosis and Treatment — one of the most active maternal-fetal centers in the nation — cares for a high volume of twin pregnancies with TTTS every year.

The next day, the Vinjamuris traveled to Philadelphia, where they underwent a comprehensive day-long series of tests at the Center. At day’s end they learned just how dire the situation was. The amniotic fluid around one of twins (the donor) was dangerously low.

Treating the twins before birth

But there was hopeful news as well: They were candidates for a minimally invasive surgical procedure to treat the condition in utero. The Center team has performed more fetal surgeries than any other program in the world.

“We came in scared to death, expecting the worst,” recalls Rachel. “But from the moment we walked in, we knew we were in good hands. They really took away my worries. They knew what they were talking about, they knew what they were going to do and it made us feel so comfortable.” 

The Vinjamuris cancelled their vacation and, two days later, Rachel underwent fetoscopic selective laser ablation, a procedure in which a special laser is used to disconnect the shared blood vessels between the twins with the hope of halting the progression of TTTS. In total, ten blood vessel communications were ablated.

Rachel had to remain on bed rest and in close proximity to CHOP for frequent checkups for one week after surgery, but within just 24 hours, it was clear that the procedure was a success. The fluid around the donor twin had already doubled, and it continued to increase each day.

“That feeling was like nothing else I've ever experienced,” Rachel says. “The feeling that your children's lives are in danger, and then to find out that they're going to be OK, that they're going to grow up to be healthy boys. It is the best feeling you could imagine.”

Double the energy, double the love

Aiden and Dillon running and playing Rachel was 37 weeks pregnant when she went into labor. Aiden and Dillon were born on July 27, 2012.

“As soon as I heard them crying, my heart just stopped,” Rachel recalls. “I was like, ‘They're healthy, they're born, they're here.’”

Now 4 years old, Aiden and Dillon are healthy, strong, energetic, active kids. They recently started playing soccer and are obsessed with dinosaurs. (Just quiz them and they’ll tell you every name!) And while they can drive Logan crazy, he has grown into a nurturing, protective big brother who clearly loves the twins.

“Words can't express how thankful we are,” says Govind. “We could have lost both of them. It's just incredible.” 

“Every day is a breakthrough,” adds Rachel. “We came so close to losing them. It’s always in the back of my mind, what if they weren’t here? It really makes you stop and reevaluate. I think it’s made me a better mother, more patient. We can’t imagine our life without them.”

Originally published August 2015
Updated December 2016

Pregnant Mom and Child

Choosing a Fetal Treatment Center

Know what questions to ask when considering fetal surgery so you can make an informed decision that is right for you and your baby.

Pregnant Mom and Child

What to Expect

From the moment of referral through delivery and postnatal care, your family can expect a supportive experience when you come to us with a diagnosis of a birth defect.