This is the girls’ story. That’s what doctors told Kendal and Tyler Conley as they worried and prayed and waited for their twin babies, fighting a rare medical condition, to be born. This is a …
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Twin-Twin Transfusion Syndrome, or TTTS, is a rare and serious medical condition that occurs in about 15 percent of identical twin pregnancies in which the fetuses share a placenta and the blood supply becomes connected through shared blood vessels.
One baby, called the recipient, receives too much blood supply and the other baby, called the donor, receives too little.
“We watch these babies very closely, every two weeks at least, starting at 16 weeks to the end of pregnancy,” said Dr. Nicholas Behrendt, 37, a maternal fetal specialist and fetal surgeon at the Colorado Fetal Care Center at Children’s Hospital Colorado.
“If the imbalance occurs, both babies can become very sick from the disease,” he said. “If the disease progresses, then severe complications such as heart failure or death can occur.”
Left untreated, one or both babies die in 80 to 100 percent of pregnancies, statistics show. The number of deaths from TTTS exceeds those from Sudden Infant Death Syndrome (SIDS). But when treated, and without complicating factors, the center expects 96.5 percent for survival of one or both fetuses and 83 percent for survival of both babies, according to a recent review of cases at Children’s. But 90 percent of TTTS cases have at least one or more complications that can reduce survival rates.
Before ultrasounds, the condition was diagnosed only after the babies’ deaths, Behrendt said. The laser surgery to separate the blood vessels has been used since the 1980s. But he said survival rates have drastically improved over the past decade because doctors are better at the technically challenging procedure that requires a team of doctors and support staff to perform.
“It’s a satisfying feeling . . . to be able to take care of these patients,” Behrendt said.
The Colorado Fetal Care Center, which opened in 2010, performs between 100 and 130 TTTS laser procedures a year involving families from throughout the country.
“I get a lot of satisfaction out of being able to educate the families about what is going on with their pregnancy,” Behrendt said. “At the end of the day, it’s great to feel that we give as many families a shot in a pretty dire situation.”
— Ann Macari Healey
This is the girls’ story.
That’s what doctors told Kendal and Tyler Conley as they worried and prayed and waited for their twin babies, fighting a rare medical condition, to be born.
This is a story, too, about the marvels of medicine: That’s what Kendal and Tyler will tell you saved their babies.
But more than anything, this is a story about family. And love. And faith that a happy ending would be written.
• • • • •
Meet the Conleys: Kendal is 33, an account manager for a wine and liquor distributor. Tyler, 38, in software sales, works from home. They live in Golden and have a 2-year-old son, Beckham, whom they call “little man.”
Beckham now also has two little sisters, whose story began June 25, when Kendal’s home pregnancy test unequivocally read “PREGNANT.”
Eight weeks later, the ultrasound technician began laughing. “Do you have twins in the family?” she asked Kendal and Tyler.
“Nooo....,” Kendal said. And then, “Oh, my gosh.”
“Yes,” the technician said, “there’s two in there.”
Kendal and Tyler were ecstatic. Beckham ran around the doctor’s office in circles.
But a hint of concern shadowed the happiness when the ultrasound also showed the fetuses, who were identical twins each in their own amniotic sacs — bags of fluid in which the fetuses grow and develop —were sharing one placenta. That meant a higher risk for the rare and serious Twin-Twin Transfusion Syndrome, or TTTS, which in simple terms means babies share blood vessels that lead to one baby receiving extra blood flow and the other baby getting too little. Untreated, one or both of the babies die 80 to 100 percent of the time.
But with treatment, the outcome is drastically different: One or both of the fetuses survive in 96.5 percent of pregnancies; both survive in 83 percent of pregnancies, a recent review of cases at Children’s Hospital Colorado in Aurora shows. Most cases, however, have one or more complicating factors that can reduce survival rates.
At 12 weeks, the couple began consulting with specialists from Children’s Colorado Fetal Care Center.
“We know that when they share a placenta . . . almost all the time you’re going to see interconnecting vessels, but about 15 percent of the time, that will cause problems,” said Dr. Nicholas Behrendt, one of the maternal fetal medicine specialists working with the Conleys. “We watch these babies very closely.”
From then on, doctors ordered ultrasounds every three days to monitor any changes in the amount of fluid in the amniotic sacs and make sure kidneys, bladders and hearts were working properly. If TTTS were to kick in, the kidneys of the baby receiving too much blood flow would essentially work overtime, filling up the sac with the extra urine being excreted. The bladder would be larger; the heart would beat faster to help the kidneys work harder.
Anxiety began to consume Kendal. A pit of worry settled in her stomach. She didn’t want to name the girls: “I was scared to get attached.”
Tyler, unsure the babies would survive, didn’t tell anyone, except for family and close friends, that Kendal was pregnant.
“Every time we went, we worried,” Tyler said. “How are their bladders? Are there heartbeats? We were waiting for the bad, bad news.”
Between 13 and 17 weeks, the ultrasounds showed some discrepancy in fluid between the babies, but it would self-correct, and the worry would ease.
At 21 weeks, however, Kendal’s stomach became so swollen and taut she felt like a huge balloon. The ultrasound showed one baby floating in a pool of fluid. The other looked shrink-wrapped.
Doctors said the condition had progressed so fast the only option was laser surgery to separate the blood vessels.
The babies underwent a battery of tests to ensure their hearts and brains were healthy enough for the procedure. Behrendt and Dr. Henry Galan explained the condition, the plan, the risks, the options.
“Knowledge is power,” Tyler said. “The more you know, the more you understand. We had so many questions.”
A week later, a team of specialists including Behrendt and Galan performed a successful 2-minute, 34-second laser surgery that separated 11 blood vessels. They also drained 2 1/2 liters of fluid.
But to separate those vessels, it was necessary to rupture the membrane that divided the babies’ amniotic sacs, which put the twins at high risk of entangling their umbilical cords.
As a precaution, Kendal went on bedrest at home. At 26 weeks, she moved to the maternal fetal center at Children’s, where she continued on closely monitored bed rest. Ultrasounds three times a day checked the babies’ heartbeats and made sure their cords remained untangled.
And despite being afraid to get attached, Kendal and Tyler got to know their babies well: Baby A, as she was called, was a spitfire, a wiggle worm who kicked and hiccupped and rolled around all the time. Baby B was mellow. Quiet. Peaceful.
* * * * *
On Christmas Eve, at about 30 weeks, Kendal’s water broke. But the goal was to reach 31 weeks — nine weeks before the original March 6 due date — to give the babies more time to grow and a better chance of surviving and developing without complications.
On Jan. 2, fluid began to build up again, igniting concern that some vessels might still be attached. So two days later, on Jan. 4 at 11:25 a.m., doctors performed a C-section and delivered two little girls.
Kendal didn’t see the babies before they were whisked away — each with her own eight-member team of neonatologists, neonatal nurse practitioners, nurses, respiratory therapists and pharmacist — to the room next door. But when she heard them both cry, she cried, too.
The babies were immediately put on ventilators to help them breathe — lungs don’t fully develop until 36 weeks — for the first 24 hours.
Tyler drifted back and forth, between mom and babies, like a passenger following directions. He actually doesn’t remember much.
When she finally met her babies, Kendal felt her anxiety ease.
Baby A, the one receiving the extra blood flow, became Kenna. She weighed 4 pounds. Baby B — Zoey — weighed 3 pounds, 10 ounces.
On March 2, just four days before their original due date, Kenna and Zoey left their side-by-side cribs in the neonatal intensive care unit and went home. Kenna weighed 8 pounds, Zoey 7 pounds, 6 ounces. Their parents brought with them oxygen equipment to help them breathe, a stethoscope to monitor heartrates, the meds and supplements needed to add calories to breast milk.
In the first 10 days home, the babies woke at night and slept during the day. Kendal and Tyler estimate their sleep totaled 15 to 20 hours during that same time. But the babies are growing and will soon not need the extra oxygen help.
Life, Kendal said, “is beautifully chaotic.”
When she and Tyler look back on the journey, they say they have witnessed two miracles.
The first is the medicine — the doctors that educated and included them in the process and the procedures and care that gave their children life.
“Seeing how these babies started and seeing how good they are — 20 years ago these babies wouldn’t have survived,” Tyler said. “What’s incredible is how medicine saved these girls.”
The second is the girls themselves.
“They’re little miracle babies,” Kendal said simply. “We are overjoyed.”
Love. Faith. Family.
And a happy ending.
Ann Macari Healey writes about people, places and issues of everyday life. An award-winning columnist, she can be reached at ahealey@coloradocommunitymedia or 303-566-4100.
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