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Twins born at Riley Hospital marks first Twin-to-Twin Transfusion Syndrome procedure in Indiana

TTTS is a serious condition where unequal blood flow between twins sharing a placenta results in one twin having too much amniotic fluid and one too little.

INDIANAPOLIS — The arrival of identical twin sisters by C-section last week at IU Health's Riley Hospital marks a medical milestone.

The girls, each weighing a little more than 3 pounds, are the first to have a Twin-to-Twin Transfusion Syndrome procedure in Indiana.

Rebeka Koehn said she was 19 weeks pregnant with twins when she was diagnosed with Stage 3 TTTS last October.

"The next stage is organ failure, and we didn't want to have to deal with brain damage and heart failure or any other organs that would shut down in that process," Koehn said.

This is the first pregnancy for Koehn and her husband Daniel after five years of marriage. Together they learned about TTTS — a rare, serious condition where unequal blood flow between twins sharing a placenta results in one twin having too much amniotic fluid and the other with too little. It has the potential for rapid progression.

Credit: Adobe Stock/Анастасия Красав

"Stage 4 is when one or both babies is in heart failure in utero, and is very ill and is very unlikely to survive an intervention or delivery. Stage 5 is where one or both babies have died," said Dr. David Streitman.

The Koehns live in Veedersburg and have family support in Indianapolis. Before now, Indiana patients would have to travel out of state to Chicago, Cincinnati, or Michigan for a surgical fix in cases like this. But with Riley's recruitment of fetal surgeons, Streitman and Dr. Hiba Mustafa, patients can receive fetal intervention care in Indiana. The co-surgeons spent most of last year creating an infrastructure and a medical support team to develop a program to provide Riley care for the nearly 30 to 45 TTTS cases that arise in the state each year.

Credit: IU Health
Cesarean births of Rachel and Hayleigh Koehn at the Riley Hospital for Children maternity tower on 02/16/23. Parents are Daniel and Rebekah Koehn. (Mike Dickbernd)

In TTTS cases, things can change quickly. Koehn was diagnosed on a Friday. It was the very next day, last October, that Streitman and Mustafa's teams at Riley performed their first of two procedures. They endoscopically used a laser to ablate the baby's connecting vessels — to better balance the fluids. Streitman said 95% of the time, it takes just one procedure. This case took two.

"We were hoping to make it to 24 weeks and then 28 weeks and 32 and then we made it to delivery day 34," Koehn said.

Credit: IU Health and the Koehn Family

Baby Haleigh arrived first and her sister, Rachel, was born a minute later.

Both have a lot of hair, but Haleigh has the most and that's a distinguishing feature for now as they steadily get stronger each day in the Riley NICU. Right now, the new parents are also relying on distinct outfits to tell the girls apart, but someday they plan to come together and share how their faith and the medical team working together led to making state history and a healthy family of four.

"It just really it seemed impossible in the beginning, and now it's like, 'wow, we've come a really long way,'" Koehn said.

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