Keith Banks and his wife Mindy hold their twins Conner, left, and Christian. They are identical even though Conner outweighs Christian by 5 pounds -— he outweighed his brother by 2 pounds at birth five months ago. Mindy was on bedrest for much of the pregnancy after finding out the twins shared a placenta. (Photo by Cliff Williams/Times-Georgian)
But the Carrollton couple’s joy could easily have been replaced by sadness. They could have lost sons Connor and Christian because of a rare medical condition. The twins are nearly 5 months old now but their journey into this world was difficult and dangerous.
Mindy Banks became pregnant last Dec. 28.
“A week later I got really sick,” she said.
She went to her obstetrician-gynecologist, Dr. David Helton of Carrollton, who suspected twins and sent her to Tanner Medical Center for an ultrasound.
“He knew they were twins and were identical,” Banks said, and that set off alarm bells. The test confirmed it. But something else was taking place so Helton referred Banks to a maternal-fetal specialist in Lithia Springs, Dr. Raj Bansal. He is one of 20 such specialists in metro-Atlanta.
What he found was both surprising and startling.
Mindy Banks is one of at least 6,000 American women each year who develop Twin-to-Twin Transfusion Syndrome, or TTTS, during pregnancy. It’s a rare condition that occurs only in identical twins sharing one placenta. According to the National Institutes of Health, TTTS happens when blood moves from one twin to the other. The twin losing the fluid is the donor, the sibling is the recipient. As the recipient twin becomes larger, the mother becomes more bloated or sick. Without intervention, it can lead to physical or mental damage to one or both twins or even to death.
“Dr. Bansal suspected TTTS,” Banks said. “Christian was donating all his blood to Connor and Connor could have gone into heart failure because he was pumping so much extra fluid.”
“Fifteen percent of women carrying identical twins will get TTTS and they have a much higher risk of complication,” Bansal said. There is no clear understanding of why women develop the syndrome, he said. “Women can’t do anything to prevent TTTS, so if they have identical twins sharing a placenta, that just happens.”
Bansal sent Mindy and Keith Banks to Cincinnati Children’s Hospital Medical Center in Ohio, one of the 20 facilities in the U.S. performing the fetal laser surgery needed to correct the problem. There are no hospitals in Georgia that perform the procedure.
Mindy Banks was subjected to an MRI (magnetic resonance imaging) and ultrasound, while echocardiograms were done on the unborn twins. Because of Banks’ condition, the Cincinnati team was not immediately able to perform the required procedure. So for the next two weeks, Mindy Banks shuffled between Children’s Hospital and a Cincinnati hotel room.
“Finally, the doctors said ‘we have to do the surgery or the babies are going to die’,” Banks said. They performed the procedure but because of complications the surgeons had to take an extraordinary step.
“The doctors decided to puncture the membrane that separates the twins so that fluid from the larger baby would flow back to the smaller one,” Banks said. That’s because Christian, the donor baby, became stuck, unable to move his arms or legs because he had no fluid. Banks said when the physicians did that, Christian immediately swung his arms and legs like a swimmer in the womb.
“Apparently one of the doctors got really emotional about that because at that moment there was life in that baby,” said Banks.
Five days later, both twins were doing well and the fluid levels remained stable. Mindy Banks returned home to Carrollton. She said that when her pregnancy reached 33 weeks, Bansal determined the fluid levels were becoming unsafe and he ordered a Caesarian-section delivery.
Connor and Christian Banks were born on July 17 but because of their conditions Connor remained in hospital for 21 days, Christian for 29 days.
The total medical bill exceeded $260,000, largely covered by the Banks’ health insurance.
“They’re expensive babies,” Mindy Banks said. She added that neither twin is on a monitor, nor do they have long-term disabilities. “They are miracle babies.”
Even in today’s high-tech, mega-information world, TTTS is virtually unknown by most parents and some medical practitioners.
“I never heard of TTTS before this all began,” Banks said.
“This is the number-one life-threatening condition facing multiple babies and we must do all that we can so more of them survive,” said Mary Slaman-Forsythe, founder and president of the TTTS Foundation in Cleveland, Ohio.”So we are trying to make women more aware of this syndrome and its consequences.”
But she said physicians also need to understand TTTS. “There are many misinformed doctors and a lot of misconceptions about this condition,” she added.
Helton said he thinks Ob-Gyns are well aware of TTTS.
“In this day and time every patient receives one, if not two, ultrasounds during their pregnancy and more if needed,” he said. “In our practice we do one ultrasound as soon as the patients comes for a first visit, then another one around 20 weeks.”
Slaman-Forsythe founded the TTTS Foundation after her own personal tragedy 23 years ago, when she developed Twin-to-Twin Transfusion Syndrome. She gave birth to sons Matthew and Steven on Dec. 7, 1989. Steven later died. The foundation holds TTTS Awareness Day, every Dec. 7.
The foundation leader said the time has come for action.
“Mothers should know something is wrong shortly after becoming pregnant when they become huge,” Slaman-Forsythe said. “And Ob-Gyns can’t just say ‘oh, you’re having twins,’ they need to change the standard of care.”
She said that includes ordering ultrasound procedures much earlier than the 12 or 13 weeks now in vogue. But Mindy Banks was in her fifth week when she went to the doctor.
“Dr. Helton was the first key in saving my boys because he made all the right checks in my case,” she said.
Nationally, the TTTS Foundation is working to create The Matthew and Steven Bill of Rights for parents and it is working with members of Congress on legislation to change the standard of care, so women with the syndrome are diagnosed earlier, giving the unborn babies the best chance to survive.
For her part, Mindy Banks has become an advocate, helping others understand Transfusion Syndrome.
“Whenever I hear someone is pregnant with twins, I tell them to find out if they’re identical and have a shared placenta because that’s really dangerous,” Banks said. “There are a lot of babies who die from this because most people don’t even know what to ask for.”
Helton offers similar advice. “When women get pregnant, their biggest responsibility is to make sure they get pre-natal care,” he said.
And Dr. Raj Bansal has this suggestion for women carrying twins: “Get an ultrasound every two-to-three weeks.”
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