Soon after Katarina learned that her unborn baby would need surgery for a rare form of spina bifida, she realized that her choice in treatment could impact not only her own child, but many others.
Katarina’s baby was diagnosed with myelomeningocele (MMC) when her hometown doctor in Las Cruces, New Mexico, noticed that he had had a sack on his spine, club feet and abnormal skull formation. The congenital condition occurs when a baby’s spine, spinal cord and spinal canal don’t close properly, allowing the spinal cord and meninges to stick out through a sack in the baby’s back. This can lead to complications like difficulty walking, lack of feeling in the legs and feet, hydrocephalus, or water in the brain, among other concerns. Surgery, either before or after birth, can significantly reduce risks and improve quality of life for children with MMC, potentially allowing them to walk without an assistance device.
Facing the challenges and uncertainty of a fetal diagnosis, Katarina turned to both her family and her doctors for support and guidance. After consulting with her doctor and her mother (a pediatric specialist herself), Katarina and her husband knew that the Colorado Fetal Care Center at Children’s Hospital Colorado could provide the expertise and experience they needed.
“It was kind of a shock, but my doctor said the best bet was fetal surgery. He referred me to Colorado right away, and he said we needed to do it as soon as possible,” she says. “That just kind of threw me for a whirlwind, and I have other kids to take care of too. It was a lot to process.” And Katarina knew she had to act fast, as fetal surgeries for MMC must be completed before her 25th week of pregnancy.
Seeking expert MMC care
Learn more about fetal surgery for MMC in this video
After the initial shock of landing in a large city and soaking up the vibrant green of Colorado’s trees — something Katarina remembers vividly — the family met with their new medical team. Though she was already well-versed in the particulars of MMC thanks to countless hours of research, there was plenty to talk through, including surgical options, potential complications of treatment, after care and more.
The traditional approach to fetal surgery for MMC is open repair. During the procedure, surgeons make an incision in the abdomen to remove and open the uterus to access the defect in the baby’s spine. Open repair is more invasive and requires patients to deliver their baby via cesarean section. But Katarina and the team decided on a relatively new approach, called fetoscopic surgery.
Fetoscopic MMC repair is designed to be less invasive and has the potential to allow patients to deliver their child vaginally. The surgery still requires an incision in the abdomen, but instead of opening the uterus, doctors insert small surgical tubes into it via three small ports.
Katarina was not only impressed by the quick healing time and opportunity to give birth vaginally, as she did with her two older sons, but also was excited at the potential to be the first Children’s Colorado patient to undergo this new procedure — a milestone for the Colorado Fetal Care Center, which is now the only center in the region to offer fetoscopic surgery.
“I felt so comfortable in that choice, and I thought it would be interesting to be able to further the science and open the door to future mothers,” she says. “And so, to me, I thought that was really cool to be able help.”
Part of what made Katarina feel secure in getting this procedure done was the time she spent getting to know her care team and preparing for surgery. She learned about their expertise and training in caring for kids with MMC and felt safe in the hands of a team that routinely performs fetal surgery with excellent outcomes. They were clear and honest about risks and benefits, and also made sure Katarina knew that her voice was the most important one in the room.
“You get to see the whole team that’s going to be there. I got to meet the neonatologist, so if something were to go wrong, I knew she was going to take care of him. I got to meet the surgeon that was actually going to do the surgery,” she says. “It just felt good to have everyone there. And then I also ended up meeting each person by themselves, so I could also ask questions by myself. I remember them going through step by step, exactly how I would prep for surgery and making sure that I knew everything that was going to happen on the day.”
Life after fetoscopic repair
After the successful fetoscopic surgery, Katarina stayed in Denver healing for two weeks before being cleared to return home. On the way though, life threw the family another curveball. Just two hours into the drive home, Katarina’s water broke. Driven by a desire to get home to her other children, the family pushed on and reached Albuquerque. The care team there took quick action to prevent delivery for two more weeks, allowing Emilio to continue to heal in the womb.
Finally, Emilio joined the family. She recovered on bed rest while Emilio recovered in the neonatal intensive care unit surrounded by family and loving support.
Soon after, they returned to Denver to ensure Emilio could continue receiving specialized care for a few more weeks.
Now back home in Las Cruces, Katarina describes Emilio as happy, smiling and cuddly. He loves to be around his three brothers and enjoys playing.
Though he still has a significant health journey ahead, his future is bright. Katarina continues to be inspired by his progress each and every day.
More than anything, Katarina wants other families to know how incredible kids with spina bifida are. “They are a lot stronger than we think,” she says.
Read more about Spina Bifida and Fetal Surgery:
Preschooler Thriving Three Years After Fetal Surgery for Spina Bifida
Considering Fetal Surgery or a Fetal Care Center? What to Keep in Mind
Preschooler Thriving Three Years After Fetal Surgery for Spina Bifida
