Midwest Fetal Care Center Celebrates 100th In Utero Spina Bifida Surgery

Finding out if a baby is a boy or a girl is an exciting time for expectant parents. A Des Moines couple expected to find out at a routine appointment, only to be told the news: Their son had a severe form of spina bifida.

An ultrasound scan performed at 18 weeks of pregnancy showed that Santiago Portillo no longer had skin covering the spinal cord, nerves, muscles or bones in his lower back.

“It was a whirlwind of questions and worries,” says Elizabeth Portillo, who was pregnant with Santiago at the time. “The beginning of a very long journey.”

She and her husband Chris Portillo met with a team from the Midwest Fetal Care Center, a collaboration between Allina Health and Children’s Minnesota.

“Once you reach that gestational age of development and the back doesn’t close, it won’t close and in fact, if anything, we see that the disease will progress,” said Dr. Joseph Lillegard, chief of open fetal surgery.

He explained their options to them, including having Santiago operate in the uterus.

“I felt like the only option was surgery,” Portillo said.

Elizabeth added: “We just wanted to give him the best chance at a better quality of life.”

In March, when she was 25 weeks pregnant, Elizabeth went into the operating room for fetoscopic repair surgery.

“I didn’t sleep the night before, I couldn’t do it,” Chris Portillo said. “I was anxious, my wife and son were going to have surgery.”

Video footage of the operation showed a packed operating room with a team of experts constantly monitoring the mother and baby.

“I asked the team to make sure we were okay and help us get through this,” Portillo said.

Dr. Lillegard explained that they opened Elizabeth’s uterus to access it. He then made three small incisions in her uterus to insert minimally invasive equipment that was used to close Sanitago’s back.

“The tissue is usually there, it’s just open, so we mobilize it and create that closure,” he said.

The operation, which lasted about 2 1/2 hours, was a success, Lillegard said. It was the 100th such operation at Midwest Fetal Care Center.

“I woke up and all I could ask my husband Chris was, ‘Is he still in there? Was he born?’ And thankfully he wasn’t,” Elizabeth Portillo said. “I remember crying once I knew he was okay.”

The pregnancy continued until 38 weeks, when contractions began in June at a Twins game. Santiago’s arrival at 3.9 kg was a relief.

“We felt like we had made it, you know,” Chris Portillo said. “There was a lot of emotion throughout that whole period.”

Santiago is now a 12-week-old baby, alert, laughing and growing.

They have regular checkups with pediatric neurosurgeon Dr. Kyle Halvorson, who was part of the operating room team.

“He’s doing remarkably well,” said Dr. Halvorson, who is closely monitoring his progress. “We’re monitoring his leg function and fine motor skills.”

Spina bifida can cause paralysis of the legs and swelling of the brain.

“Before fetal surgery was available, many of these children were confined to wheelchairs,” Dr. Halvorson said.

Every step is a blessing for his parents.

“It’s life-changing for the child and the parents,” Chris Portillo said.

Santiago also gets new casts on his legs about once a week, called serial casts. This is meant to improve his mobility. He has club feet, partly due to spina bifida.

His doctors hope he will eventually be able to stand and move around independently.

“This is the greatest thing that has ever happened to me, so I’m very grateful to everyone here,” Elizabeth Portillo said.