Fetal surgery at UC Davis Health gives Ohio baby new hope

The moving van was packed. The house was empty. Jack and Lexy were days away from leaving Ohio and driving to their home state of Florida to move closer to family.

Their wedding was pending. So was the birth of their first child. The happy couple couldn’t be more excited about the future.

Life changes in an instant

Lexy had an utlrasound appointment before they hit the road. Although she wasn’t quite due for more imaging, the office agreed to fit her in. That appointment would change their lives in every way.

“We thought it would be a regular scan, so we were in our own world. You're not thinking anything is wrong,” Jack said. “But then they put us in a back room for like 30 minutes. We get hit with the news that our daughter has spina bifida.”

Spina bifida, or myelomeningocele, occurs when the spinal cord fails to close properly during the early stages of pregnancy. The birth defect can lead to a range of lifelong cognitive, mobility, urinary and bowel disabilities. It affects 1,500 to 2,000 children in the U.S. every year. Spina bifida can range from mild to severe.

A specialist confirmed the diagnosis.

“Obviously, the next 24-48 hours were a complete whirlwind,” Jack said.

The couple cancelled their plans to move to Florida and decided to stay in Cincinnati. But not for long.

We thought it would be a regular scan, so we were in our own world. You're not thinking anything is wrong. Then we get hit with the news that our daughter has spina bifida.”—Jack Harrington, Millie’s dad

Another life-changing discovery

As the couple were frantically calling family to share the news, it was Jack’s brother, Patrick, who told Jack and Lexy about a landmark clinical trial at UC Davis Health. Known formally as the “CuRe Trial: Cellular Therapy for In Utero Repair of Myelomeningocele,” it is the world's first spina bifida treatment combining fetal surgery with a stem cell treatment. 

But Lexy wasn’t ready to make any decisions.

“When I got the diagnosis, I shut down completely. I didn't want to think about what was going to happen next,” Lexy said. “Jack was really the rockstar. He did all the legwork.”

Jack called and spoke to UC Davis Fetal Care and Treatment Center Clinic Manager Amy Powne. Amy spent more than 90 minutes on the phone answering their questions.

One more critical phone call

The next day, surgeon Diana Farmer called the couple. Farmer is an internationally renowned fetal and neonatal surgeon who helped pioneer this spina bifida treatment.

“I was surprised that this prestigious surgeon reached out on her cellphone,” Jack said. “Dr. Farmer was very caring and shared stories about the mothers and children she had been able to help. She was very good at explaining what we could expect.”

The procedure involves opening the mother's abdomen and uterus to allow access to the fetus. Surgeons can then close the neural tube and other layers of the fetus’ back. Although it cannot restore already lost neurological function, the procedure may prevent additional loss from occurring during the remainder of the pregnancy.

California bound

Within days, the couple flew to Sacramento to meet with Diana Farmer and the team.

They enrolled in the CuRe trial almost immediately.

“It was not only based on the research we had done, but also because of the amazing people we met,” Jack said. “It was so evident how committed they were. We left feeling really confident.”

I was acknowledged as a mother, as a wife, as a human. It was unbelievable. I left there knowing I wanted that team to take care of me and my child throughout the whole journey.” —Lexy Harrington, Millie’s mom

Lexy was screened to see if she would be a good candidate for the surgery.

Fortunately, Lexy passed the screening process and was accepted into the trial.

“I was acknowledged as a mother, as a wife, as a human. It was unbelievable,” Lexy said. “I left there knowing I wanted that team to take care of me and my child throughout the whole journey.”

Her fetal surgery was scheduled for Oct. 11, 2024.

An eventful few weeks

Meanwhile, Lexy and Jack travelled from Ohio back to Florida for their wedding on Sept. 28 — during a hurricane, no less. It was an “adventure,” they said, and a sign of things to come.

Soon the Harringtons relocated to Sacramento with their three dogs – Duke, Lilah and Benji – in tow. Lexy prepared herself.

“I had never had a surgery in my life and was very nervous about it. Nurse Melissa was absolutely amazing,” Lexy said, of Melissa Barbato, who is part of the CuRe trial team.

“She provided so much comfort. When I said goodbye to Jack, I knew I was in good hands. The whole team was really caring and supportive.”

Lexy’s C-section was scheduled for late December. Baby Millie had other ideas. Less than three weeks later, Lexy went into labor.

“I woke up on Halloween at 4 a.m. with shooting pains that I couldn't talk through, so we went in,” Lexy said. “After about three hours on the monitor, they decided to deliver Millie to avoid a uterine rupture.”

It all happened so fast. Millie arrived at 28 weeks and one day on Oct. 31, weighing 2 pounds, 10 ounces.

UC Davis Children’s Hospital, the right place to be

Although a long hospital stay was not what the Harringtons had planned, the couple again found themselves in the right place. Not only is UC Davis Children’s Hospital home to the innovative CuRe trial, it also has a level 4-designated nursery providing the highest level of clinical care for newborns and premature babies like Millie.

“We had no idea what the next few months would bring, but luckily Millie had a very easy NICU journey,” Lexy said. “We continued to put our trust in the UC Davis doctors and nurses like we had with Melissa and Dr. Farmer, including NICU nurse Miranda who helped us greatly during that time.”

It was 58 days before Millie and her family would be headed home, but the Harringtons say every minute was worth the wait.

“It was just a feeling of excitement. That's the best word I can use,” Lexy said. “It felt like everything was finally falling into place, the way it was supposed to be.”

When they travelled back to Ohio, the Harringtons were met with, what else … a snowstorm. Par for the course, but nothing this family couldn’t handle. In fact, they faced it with excitement.

“We were snowed in for 48 hours. It was awesome!” Jack said. “I feel like that day that we were all in the house together was just everything we could've ever imagined.”

Miracle Millie

As for baby Millie, she turned 1 last month and is developmentally on track.

“Millie is the easiest baby. Always smiling and belly laughing. She’s crawling like crazy and starting to pull herself up to stand. Nothing is slowing her down,” Lexy said. “It's a joy every second of every day. We call her Miracle Millie. She is absolutely amazing.”

As for their thoughts on all they had been through to get to this point?

“If I had the choice to do it all over again, I would do it 1000%. I wouldn't change anything about our journey,” Lexy said. “We did everything possible within our power to give Millie the best life and were fortunate enough to have positive outcomes. We believe it's the best thing that we could've ever done for her.”

Jack concurred.

“Obviously, it's a very personal decision to have the spina bifida surgery,” said Jack. “But I would tell parents to do everything in your control to set your child up for success, which includes moving your family to Sacramento to be part of the CuRe Trial if possible.”

Related Resources

• World’s first stem cell treatment for spina bifida delivered during fetal surgery

• To sign up for the CuRe trial, visit their StudyPages or call 1-916-794-2229.