Fetal Care

Patient Stories | Vivienne and Myelomeningocele

Paula and Reid will always consider Cincinnati Children’s a special place where their lives were changed forever.  

They first arrived four years ago, when Paula was approximately 21 weeks pregnant with their third child. The baby had recently been diagnosed with myelomeningocele (MMC), the most serious form of spina bifida. 

With the family uncertain about where to go for treatment and surgery, Paula’s doctor in their hometown of Ft. Wayne, IN, suggested they look at Cincinnati Children’s Fetal Care Center. 

They did, and it felt like the right fit for their family. Paula and Reid opted for the fetoscopic prenatal MMC repair surgery following a comprehensive consultation with the Fetal Care Center team and Jose L. Peiro, MD, PhD, endoscopic fetal surgery director. 

“I know, with Vivienne’s specific diagnosis, that if we did not qualify for fetal surgery, her life right now would look entirely different,” said Paula. “I know that for certain. And I think to be in the hands of someone who has the knowledge and skill to literally change all of our lives — it’s like the greatest gift that I think we could ever ask for.” 

Vivienne, now 3, is doing very well. The four-hour fetal surgery, which took place when Paula was 23 weeks pregnant, helped revert the Chiari malformation present before Vivienne’s birth and allowed her to grow and develop well, delaying treatment for hydrocephalus (a buildup of fluid in the brain) and avoiding further motor function impairment.

Benefits of the Fetoscopic MMC Repair Surgery 

“At that time (May 2018), we had done more than 50 prenatal spina bifida repairs by open fetal surgery, and a few by fetoscopy. We were completing our learning curve for the innovative fetoscopic minimally invasive approach,” explained Dr. Peiro.

Vivienne’s surgical team also included a maternal-fetal medicine (MFM) specialist, as well as Dr. Peiro’s partner in fetal surgery, Foong-Yen Lim, MD, surgical director for the Fetal Care Center. Charles Stevenson, MD, pediatric neurosurgeon and co-creator of the Fetal Myelomeningocele Surgery Program, completed the team.

“These surgeries are sophisticated and require a multidisciplinary team to be successful,” said Dr. Peiro. 

Following the surgery, Paula remained at the nearby Ronald McDonald House, and Vivienne was born at 34 weeks' gestation. Another advantage of fetoscopic surgery is that Paula could maintain her original birth plan and avoid a C-section delivery that is required in the open approach. 

“We knew exactly what to expect. And I didn’t feel like there were any surprises along the way. And that helps sort of ease the process that could have been more traumatic,” said Paula. 

Taking Myelomeningocele (MMC) Research from the Lab to the Bedside

What Paula and Reid didn’t expect, though, was finding out after Vivienne’s birth that Dr. Peiro is not only a surgeon but also an active researcher who takes learnings from the lab to the clinic and vice-versa. 

A main area of research of the Peiro Research Lab focuses on myelomeningocele. 

“Being very active in clinical practice and dealing with complex cases provides a lot of questions that I try to answer in the lab,” said Dr. Peiro.

These questions morph into larger ideas and theories, which generate research projects. Once developed, these projects provide solutions that can be applied in the clinical setting, hopefully benefitting future patients. 

“After spending many years learning and building skills to approach and reach clinical excellence, for me, it is a moral obligation to use all that acquired knowledge. I know I must look for new improvements—via research—and also transfer all that [acquired knowledge] to new generations of surgeons and scientists—via education,” said Peiro.

While he admits it can be challenging and time-consuming to be both a surgeon and an active researcher, Dr. Peiro focuses on the excitement of innovation and discovery. 

“In the laboratory, we design projects that can give us answers and solutions to quickly use in the regular day-to-day treatments for patients with some malformations,” he said.

The ultimate goal of the research, explains Dr. Peiro, is to help families and babies like Vivienne by improving how they deal with their anomalies.

Recalling the day Vivienne was able to leave the newborn intensive care unit (NICU) and go home two weeks after she was born, Dr. Peiro points to her continued progress as an example. 

“That was also my birthday, when she was discharged home. So, a great present for me that day. Hopefully, she can continue to develop with minimal handicaps and have a good quality of life.” 

Cincinnati Children’s Exceeds Family’s Expectations

As her birthday approaches this summer, Vivienne continues to do well. After being a patient in the Spina Bifida Clinic for two years, Vivienne is now seen by Dr. Stevenson in neurosurgery and Brian VanderBrink, MD, in urology.  

“We recognize that she will always have some physical limitations, but we could not be prouder or more thankful that her cognition is 100 percent,” said Paula, describing Vivienne’s progress in both body and mind. 

“For being only 3 years old, she is very articulate. She’s very smart and so chatty. Our goal is to help her have an independent life. And I think that she will have that.” 

Currently, Vivienne loves painting, Legos and books. She’s not reading yet, but she’s recognizing her letters, and she’s very active and enjoys playing outside and in her treehouse.

“We’re so thankful. We know we are in the right hands. Cincinnati Children’s will always be a part of our life,” said Paula. “I would go to the ends of the earth for her, and that led us to Cincinnati. It’s a special place for us.”

(Published May 2022)