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.
By Maureen Gilmer, IU Health senior writer, mgilmer1@iuhealth.org
To look at their babies now, just six days after birth, Rebekah and Daniel Koehn can hardly believe their eyes.
Two precious little girls, born seconds apart and weighing over 3 pounds each.
Hayleigh and Rachel Koehn are tiny miracles really, delivered six weeks prematurely after a monthslong fight to keep them alive.
There was a time, just a few months ago, when Rebekah and Daniel weren’t sure they would reach this happy day.
“At first there was a lot of crying and feeling overwhelmed,” Rebekah said. “We weren’t given good chances for both babies to survive. But we believed God had this handled.”
Strong family support and a solid medical team behind them has made the journey easier, she added.
The Maternal-Fetal Medicine team at Riley Children’s Health managed the first-time mother’s health and that of her twins from the time Rebekah was 19 weeks’ pregnant – first performing “lifesaving” surgery in the womb, then delivering the babies safely via Cesarean section.
The laser surgery to treat a rare condition called Twin-to-Twin Transfusion Syndrome (TTTS) was a first for Riley, according to Dr. Mara Nitu, chief medical officer, who spoke briefly at a news conference this morning attended by hospital leadership, as well as physicians and nurses involved in the Koehn family’s care.
“It is a great joy to share in this historic moment for Riley Hospital,” Dr. Nitu said.
The births themselves were captured on video and in photos in a crowded surgery suite in the Riley Maternity Tower, where multiple teams of specialists were on hand to assist.
It was at a 19-week ultrasound when the Koehns, of Veedersburg, Indiana, learned that their babies were suffering from TTTS, as well as Selective Fetal Growth Restriction.
TTTS can affect identical twins or other multiples. It occurs in 10% to 15% of pregnancies where twins share one placenta (monochorionic) and a network of blood vessels that supply oxygen and nutrients essential for development in the womb.
With TTTS, there is an imbalance in blood flow to both babies. One twin (called the “donor” twin) gives too much blood to the “recipient” twin.
Left untreated, one or both twins likely would not survive.
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 save the tiny identical twins.
The procedure involves inserting a small fiber optic scope equipped with a tiny camera inside the uterus, mapping the blood vessel connections to see exactly where the twins were sharing blood back and forth unevenly. Once the connections are found and identified, a tiny laser burns those connecting points, allowing both babies to grow more independently.
“Even though this is a magical, lifesaving procedure, it can come with a long list of complications, including early labor,” Dr. Mustafa said.
For the past 20 years, the treatment for TTTS is laser ablation of the blood vessels that connect both twins, but until recently, Indiana patients had to go out of state for interventional surgery, explained fellow fetal surgeon Dr. David Streitman.
With the development of Riley’s fetal intervention team over the past year, these services are now closer to home, benefiting mothers and babies, because timely referrals for care can be the difference between life and death.
In Rebekah’s case, she first saw Dr. Mustafa on a Friday, and she was in the operating room the next day for the first laser ablation.
After a second laser treatment and careful monitoring, Rebekah, a first-grade teacher who took a leave of absence from her job, was able to make it to the agreed-upon delivery date of Feb. 16, six weeks before her due date.
“We decided 34 weeks is the sweet spot,” Dr. Mustafa said.
The babies’ lungs and brains are mostly developed by that point; waiting any longer could put both babies and mom in jeopardy.
Neonatologist Dr. Melinda Markham, medical director of the Riley Fetal Center, reports that both babies are doing well today in their adjoining rooms in the Riley Maternity Tower NICU.
“They just need to get bigger, be able to maintain their temperature and learn how to feed, and they’ll be home in a flash hopefully.”
Earlier today, the proud new parents were tending to their newborns in the NICU, dressing them in matching preemie outfits that proclaimed: “Hi, I’m new here.”
The girls may look identical, but their parents already can tell them apart. Rachel has mom’s ears, while Hayleigh has dad’s, they said.
Daniel, who described waiting for the birth as something akin to pre-game jitters back in high school, said it doesn’t quite seem real that he’s the dad of twins yet.
“It will feel real when we get home,” he said. “We can’t wait for that day to come.”
“It’s hard having babies in the NICU, but they’re doing well,” Rebekah said, adding that they both are grateful for the care they have received.
“We love Riley. It’s a huge relief to be here.”
Dr. Mustafa said the state of Indiana is fortunate that Riley has embraced the fetal intervention program.
“It’s a huge step, and you need a lot of support – nursing, physicians, leadership,” she said. “Everyone has been up to the challenge.”
As Rebekah and Daniel listened, Dr. Mustafa expressed her gratitude to the couple for trusting the Riley team.
“We thank them for the honor of delivering both babies safely. She (Rebekah) is sitting here just days after delivery looking like a super mama.”
Photos and video by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org
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