Callie and her husband, Taylor, struggled with infertility for two years, until finally it happened: the couple found out they were expecting and would be parents of not just one baby, but three — triplets! But their journey would be a long one, with many unexpected events.

“It’s kind of been a rocky start from the very beginning,” Callie says. “Around nine weeks pregnant, we lost the third baby. Then at 18 weeks during our anatomy sonogram, we found out that one of our now twins, our girl, Kai, had congenital diaphragmatic hernia (CDH). It’s not what any parents expect when they get pregnant and prepare for this special gift from God.”

CDH is a birth defect where a hole develops in the diaphragm, which allows organs to migrate up into the chest cavity, hampering the ability of the lungs to grow. CDH sometimes happens in conjunction with other anomalies and occurs in about 1 in every 3,500 births. Callie and Taylor are from Texas, and the doctors who diagnosed Kai only see about three CDH cases a year — they knew about the condition, but were not experienced in treating it.

Thankfully, their boy, Kru, appeared to be developing normally.

“We had no idea what CDH was. We had never heard of it,” Callie says. “We were so confused. So, the next few days, we researched. As we started Googling CDH, Florida came up. St. Petersburg. My mom was like, ‘You have to go to Florida.’”

“When parents get on the internet to look where to go, it's usually because they're not feeling confident in where they are,” says David Kays, M.D., medical director of the Center for Congenital Diaphragmatic Hernia (CDH) at Johns Hopkins All Children’s. “A lot of providers are not confident in managing patients who are a twin.”

At first, they thought the idea of going to Florida was crazy. But after talking to Kays and his team, who run the first and only dedicated CDH intensive care unit in the country, they were all in.

By about 24 weeks, the family flew to Florida to be seen at Johns Hopkins All Children’s Hospital, like many families across the United States do when they receive a CDH diagnosis.

“His team was amazing,” Callie says. “Dr. Kays said we needed to get Kai as big as possible to give her the best shot at life. Kai had 30% of her liver up in her chest, less than 8% lung and she was very small.”

They went back to Texas for a bit, but relocated to Florida to be near the care Kai needed by 30 weeks in preparation for delivery.

By 34 weeks, Callie and Taylor had a serious discussion with Kays about whether or not to start Kai on extracorporeal membrane oxygenation (ECMO), a heart-lung bypass machine that is a form of life support, right away, or give her body a chance to fight by itself after she was born. Small lung capacity can limit oxygen to the brain in a newborn, impairing development.

“ECMO can be very scary, but we knew Dr. Kays was very educated with ECMO experience,” Callie says. “The biggest concern was saving Kai’s brain and thinking about how she was going to proceed with her life after this. We wanted her to keep up with her brother. We wanted her to go to school and just live a normal life.”

“That conversation was the Thursday before delivery,” Taylor says.

They decided to move forward with ECMO right away after birth. After that, it was supposed to be a waiting game of letting the babies grow until they reached 37 weeks, when there was a scheduled cesarean delivery. But the twins had a different plan.

The Twins’ Debut

It was Sept. 30, 2023. Maternity photoshoot day on the beach! It was supposed to take place that night, but as it turned out, storms were expected, so the shoot was moved up to sunrise. It was a good thing, because Callie felt as though the twins weren’t moving as much, so they went to the hospital to check on the babies that afternoon.

At the hospital, she started having contractions. They got stronger and closer together, her water broke and she was dilating. Callie was in labor.

“We were in total shock,” Callie says. “But we were really calm. We knew as parents we did everything we needed to, and she was in the absolute best place she could ever be.”

Kai arrived weighing a tiny 3 pounds, 14 ounces. Kru was doing well, but because he was premature, too, needed to be treated in the Johns Hopkins All Children’s neonatal intensive care unit (NICU).

“It honestly made everything just a little bit more challenging,” Callie says. “Because we had Kru on the sixth floor, Kai on the eighth floor, so we had to split our time back and forth. But the NICU team at Johns Hopkins was amazing.”

Kai was immediately put on ECMO, and the next day, just a little over 12 hours after she was born, she was set to her have her CDH repair surgery. Kays moved her organs into the correct positions and repaired the hole in her abdomen. She also had a hole in her heart that would eventually need to be repaired.

Kai then had a long run on ECMO for the next 35 days.

“Once they’re on ECMO, it’s a high-tech sort of way to stand back and give them time for their lungs to expand and grow,” Kays says. “I think that's the coolest part of this story. We create an environment within which they can get better. We believe the heart can do it. We believe the lungs can do it.”

“She was extubated from the ventilator 10 days after being taken off ECMO,” Callie says. “She was then placed on a CPAP machine and after that, finally only needed oxygen.”

She also had a gastrostomy tube (G-tube) placed to help with nutrition and feedings.

“It seemed like she was flying,” Callie says.

Flying — into the New Year

After 92 days in the hospital, on Dec. 31, 2023, Kai was finally discharged.

The family stayed nearby for a few weeks after.

Finally, they flew back home to Texas. But it wasn’t without some turbulence. It was then that Kai’s episodes of breathing difficulties became more intense.

“Having Dr. Kays talk to our pulmonologist here in Texas, it was so great because it showed how much he cares for his patients,” Callie says.

“We recognize and appreciate that other providers are doing their best, but our team knows CDH physiology,” Kays says. “This is the best place to be if you can be.”

Kai’s situation became so dire that Callie and Taylor chose to have Kai transported back to Florida by the Johns Hopkins All Children’s LifeLine Critical Care Transport team to get her stable again. Kays personally spoke with them to let them know he and his team would be there to pick up Kai in Texas.

“Seeing Johns Hopkins on the back of their outfits was just like, I felt so much at peace at that point,” Callie says. “We knew she was in good hands.”

“Kai needed us to kind of go back to basics and say, ‘This is a breathing problem,’” Kays explains. “Why aren't you breathing as well? Is it related to your heart or is it unrelated to your heart? Because there are a lot of reasons that kids with CDH may not breathe as well: fluid in their body, acid base balance in their body, viruses—a variety of things. It’s kind of like being a bit of a detective to figure things out.”

Kays and his team improved Kai’s breathing and health, allowing her to get back home again. She still has a G-tube and recently had surgery on her lip to improve feedings. But now, a year later, both she and Kru are thriving and looking forward to seeing Kays at Kai’s one year follow-up appointment.

“Looking back a year ago this time, I was prepared for the worst to happen,” Callie says. “I was dreading every moment, scared, anxious, and feeling afraid of the unknown. Now a year later, the year has flown. It doesn’t seem like we spent half of the year in the hospital. It doesn’t seem like we lived 2,000 miles away from home. Kai is a bundle of joy. Her laugh makes every tear from the moment I found out about her condition so worth it. I thank God every day for Kai, Kru, Dr. Kays and the amazing staff and program he has created for families like ours.”