“God, you picked the wrong person.”
That was Misty Oglesby’s first thought when the doctor informed her 20 weeks into her pregnancy that she and husband, Curt, were having conjoined twin girls.
She had figured something wasn’t right. Her abdomen was growing bigger than what seemed normal. She was concerned enough to switch obstetricians, and now her suspicion mushroomed into full-blown fear.
Stunned by the news, she and Curt struggled to make sense of what was happening. “It was hard to take it all in,” she remembers. “We didn’t know what it meant, what it would look like in the future. We were facing the unknown, and that was the scariest part.”
Says Curt, “The first thing they told us was not to go on the internet. Of course, that’s exactly what we did when we got home.”
The couple was referred to the University of Cincinnati Medical Center’s high-risk pregnancy program where they were introduced to Sammy Tabbah, MD, and a host of other specialists from UC and Cincinnati Children’s. The team performed ultrasounds and an MRI to learn more about the twins’ condition. The scans showed they were joined at the chest and abdomen – from the sternum to the umbilical cord. Their pericardial sacs were fused, as were their diaphragms. Their intestines were separate, but they shared a liver. To complicate matters further, one of the girls had a complete atrioventricular canal defect, which meant part of the tissue inside the heart did not form correctly, resulting in problems with the valves that regulate blood flow.
The doctors estimated the girls had a 5 to 25 percent chance of survival.
“We were given the option of terminating the pregnancy,” says Misty. “But we felt that if there’s even a 5 percent chance they could survive, we wanted to give them that 5 percent.”
Misty drew comfort from Tabbah. “He was so calm and positive about our situation. Every time I went to see him, I’d come away thinking, ‘this is going to be okay.’”
A New Normal
The Oglesbys live in a tiny house on a sprawling farm in Laurel, IN – about an hour’s drive from Cincinnati.
Nothing prepared them for the news about their conjoined twins, but they quickly adapted to their new reality. When Misty was 30 weeks along, she developed pre-eclampsia and was hospitalized. Seven days later, on October 27, 2014, Selah and Shylah Oglesby were born by Caesarian section at UC Medical Center.
“Roughly 50 staff from UC and Cincinnati Children’s were in the delivery room,” says Misty. “There was a team for Selah, a team for Shylah and one for me. They were very well-organized and had an emergency plan in place. I felt comfortable that they would take care of us if something went wrong.”
Fortunately, the delivery went well. But because the girls had to be swiftly transported to the Cincinnati Children’s NICU, Misty barely had a chance to see them. “I tried to touch them in their incubator, but I could hardly reach. I didn’t realize how difficult it was going to be to let them go,” she says.
Misty remained hospitalized for a week, during which she was able to see Selah and Shylah via Skype. Meanwhile, Curt shuttled back and forth between the two hospitals, keeping an eye on all three of them.
Finally, Misty was released and able to hold the girls for the first time. “I was having a hard time holding myself together,” she recalls. “They had PICC lines and oxygen tubes attached to them. I didn’t know what everything was, so seeing them like that was frightening. But when I got to hold them, none of it mattered. They were my babies, my perfect, sweet, precious little girls. It was a very special moment, very overwhelming.”
A Gauntlet of Challenges
With their safe delivery behind them, the twins had many more hurdles to overcome.
Says Foong-Yen Lim, MD, surgical director of the Cincinnati Fetal Center, who coordinated the babies’ care, “Because of their prematurity and Selah’s heart defect, they were at risk of developing further complications. We monitored them carefully, and luckily, Selah’s cardiac failure did not progress rapidly, which allowed us to improve their nutrition status and to plan better for their separation surgery.”
The surgical team included multiple disciplines – liver, cardiology, plastic surgery, anesthesia, ancillary support teams, the transport team and perioperative surgical subspecialties. They met regularly to map their strategy. They also learned during pre-operative procedures in the OR and the imaging suite how best to position the twins, monitor dual sets of vital signs, intubate and induce anesthesia.
On January 28, 2015, the girls were wheeled into surgery at 7:30 am. Says Lim, “From the time we hit the operating room to the time we left, things moved as smoothly as I could have hoped for. Yes, it was a challenging situation, but when we got to the OR, we knew we were prepared.”
The first incision was made at 11 am, and Selah and Shylah were fully separated around 3 pm. They left the OR at 6 pm.
“That was a long, difficult day,” says Misty. “We were essentially giving our world to these surgeons, and we weren’t sure if we would get them back. When the girls came through the surgery okay, they were critical, and they would be for some time. But it was a huge relief to see them in their own rooms and know they were stable.”
Shylah progressed well and was able to be discharged in mid-April. But Selah’s recovery was not as smooth. She developed necrotizing enterocolitis, which caused her intestines to swell and compromise her breathing. She underwent a banding procedure on her pulmonary artery to buy more time for the infection to subside before the cardiac team repaired her AV canal defect.
Says Misty, “She was so sick that there were a couple of times the doctors told us to say our final good-byes. But she fought through it. When they were finally able to repair her heart, she started improving to the point where she was able to leave the hospital in July.”
The Oglesbys remained at the Ronald McDonald House until February 2016, while the girls continued with follow-up care.
It took 15 months from the day the twins were delivered to bring them home to Indiana. In that time, Misty and Curt received an education in more aspects of critical care than they ever wanted to have.
Says Lim, “Curtis and Misty are doing an awesome job caring for Selah and Shylah. Without their hard work making sure the girls had what they needed, they would not be doing as well as they are now.”
Selah will require a cardiac stent at some point, and both she and Shylah will eventually need reconstructive surgeries on their abdomens. Meanwhile, they have benefitted from speech therapy, occupational and physical therapy and a lot coaching from the nutrition team. The family recently celebrated the girls’ 2nd birthday with family and friends – a milestone they didn’t know if they would ever reach.
Looking back on their journey, both Misty and Curt credit their faith for getting them through. And they are tremendously grateful to their care team at UC Medical Center and Cincinnati Children’s.
“The staff worked so hard to keep Selah and Shylah alive, and we thank them from the bottom of our hearts,” says Misty. “They will always be part of our family. We’ll never forget them.”