TTTS twins are thriving after surgery in the womb

By Maureen Gilmer, Riley Children’s Health senior writer, mgilmer1@iuhealth.org

They once were known as Baby A and Baby B – identifiers given to them in the delivery room at birth.

Today, 10-month-old twins Hayleigh and Rachel Koehn have shrugged off those labels and grown firmly into their given names and unique personalities.

The attention-grabbing girls, dressed in matching red-and-white checked dresses and black patent leather shoes, turned heads in the Riley Hospital for Children Maternity Tower recently during their first visit back since they were discharged last March.

It’s hard not to stop and smile when you see the active twins and their equally busy parents, Daniel and Rebekah Koehn of Veedersburg.

During their first interview since they were just a few days old, the babies babble and wiggle and smile and giggle. They have a lot to say.

They go on to pound a table with their tiny hands when their parents put them down to show off their standing skills.

“They are happy babies,” Daniel said. “They get along well with each other,” Rebekah added. “They definitely have their sibling rivalry moments when they tackle the other, but otherwise they play well.”

The family came to Riley on Dec. 12 for a follow-up appointment with Dr. Sarah Wing, a pediatric neurologist, but they made other stops as well to see members of the neonatal intensive care unit team and the Maternal-Fetal Medicine team. Previous appointments for the twins have been at Riley at IU Health North Hospital.

The Riley MFM team managed Rebekah’s health and that of her twins beginning when the first-time mom was 19 weeks’ pregnant – first performing lifesaving surgery in the womb, then safely delivering the babies six weeks prematurely via Cesarean section Feb. 16.

Hayleigh and Rachel made history even before they were born. They underwent laser surgery in the womb to treat a rare condition called Twin-to-Twin Transfusion Syndrome. It was the first such procedure at Riley.

TTTS can affect identical twins or other multiples. It occurs in rare cases when twins share one placenta and a network of blood vessels that supply oxygen and nutrients to developing babies.

With the disorder, there is an imbalance in blood flow to both babies. One twin (the donor) gives too much blood to the recipient twin. In the Koehn pregnancy, Rachel was the donor twin.

Left untreated, one or both twins likely would not survive.

“Back then, it was day to day,” Daniel said. “We were so worried about losing Rachel.”

Dr. Hiba Mustafa is a fetal surgeon at Riley who intervened in Rebekah’s pregnancy at 19½ weeks and again at 21 weeks, both times performing a delicate laser surgery to untangle the blood vessels and sever the connections to save both babies.

To look at the girls today, you’d never know their early struggles. They spent less than three weeks in the hospital after birth and are thriving now, their parents said.

“I feel excited to be here and see the doctors and hear what they’re going to say because it’s not a feeling of dread like before,” Rebekah said. “I know the girls are doing really well. I can see their progress.”

Neither baby appears to be suffering any kind of developmental delay, and their scans have been clear, Rebekah said. They have no special equipment at home, they eat well, and they love to wake up each morning and see the other staring back at them from the nearby crib.

“I think everybody is surprised how well they’re doing.”

Not that it’s always been easy, they say.

“The first month at home was terrible,” Daniel admitted, until they got the twins on a regular feeding schedule so mom and dad could take turns getting up.

Since then, he said, “it’s been a different world.”

Rebekah, a first-grade teacher, is back at work, as is her husband, but they have found an excellent in-home daycare for the girls.

As the interview comes to a close, the chimes announcing the birth of another baby ring out in the Maternity Tower atrium.

“They played it twice for us,” Daniel recalled. “It’s a good sound to hear.”

Photos by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org

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Special delivery: Twins receive lifesaving surgery before birth - Hayleigh and Rachel Koehn are tiny miracles who survived a rare complication called Twin-to-Twin Transfusion Syndrome, thanks to fetal intervention surgery at Riley.