Finding out if the baby is a boy or a girl is an exciting moment for soon-to-be parents. A couple from Des Moines expected to find out during a routine appointment but instead received the difficult news their son had a severe form of spina bifida.     

An ultrasound at 18 weeks gestation showed Santiago Portillo had no skin covering the spinal cord, nerves, muscles or bone of his lower back.

“That was just a whirlwind of questions and worries,” said Elizabeth Portillo, who was pregnant with Santiago at the time. “The start of a very long journey.”

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

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

He explained their options, which included operating on Santiago in the womb.

“I feel like the only option was to have surgery,” said Chris Portillo.

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

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

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

Video footage of the surgery showed a packed operating room with a team of experts continuously monitoring mom and baby.

“I asked the team just make sure we’re okay, please just get us through this,” said Elizabeth Portillo.

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

“The tissue is generally there, it’s just open so we’re just mobilizing it and creating that closure,” he said.

The successful surgery lasted about 2.5 hours, said Dr. Lillegard. It was the 100th surgery of its kind at the Midwest Fetal Care Center.

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

The pregnancy continued all the way to 38 weeks when she went into labor in June at a Twins game. Santiago’s entrance into the world at 6 pounds 4 ounces was a relief.

“It felt like we had made it you know,” said Chris Portillo. “There’s a lot of emotion throughout that entire time.”

Santiago is now an alert, giggling, and growing 12 week old infant.

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

“He’s doing remarkably well,” said Dr. Halvorson, who is tracking his milestones. “We’re watching how their leg function is coming along, we’re watching their fine motor skills.”

Spina bifida can cause leg paralysis and brain swelling.

“Before fetal surgery was available a lot of these kids would be confined to wheelchairs,” said Dr. Halvorson.

Each milestone a blessing for his parents.

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

Santiago is also getting new casts on his legs about once a week, which is called serial casting. It’s meant to improve his mobility. He has club feet, in part due to the spina bifida.

His doctors expect he will stand and move independently eventually.

“He is the greatest thing that has happened so I’m very grateful for everybody here,” said Elizabeth Portillo.