Angel’s Story: An Arizona Family’s Journey to Fetoscopic Spina Bifida Care

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When Diana and her husband Ivan learned they were expecting a baby, it came as a joyful surprise, especially after doctors had warned her that pregnancy might not be possible.

One morning during Diana’s second trimester, a news segment highlighting a fetal surgery caught the couple’s attention. 

“We were saying, ‘Oh, can you imagine having that when you’re pregnant?'" she said. 

Just two weeks later, that possibility suddenly became their reality. Following a routine ultrasound, they were told that their son Angel would be born with myelomeningocele spina bifida. 

“In that moment, it was just feeling like the end of the world,” Diana said.

Myelomeningocele, also known as open spina bifida, is a birth defect in which the spine doesn’t fully close during development. This condition leaves an opening, usually in the lower back, where part of the spinal cord comes through and connects to the skin. Because of this, children with this condition may have weak muscles or difficulty moving their legs. They can also develop hydrocephalus, a buildup of fluid in the brain that may require treatment. 

A doctor told them there might be a chance to improve Angel’s condition through minimally invasive fetal surgery — but their home hospital in Arizona didn’t offer the procedure. 

Finding Hope in Chicago

Through research, the couple found The Chicago Institute for Fetal Health at Ann & Robert H. Lurie Children’s Hospital of Chicago. As one of the few comprehensive fetal centers in the country, the team was well-equipped to perform the repair. 

“They were the only ones giving us the opportunity to have surgery, because I had a high-risk pregnancy,” Diana said. “They gave us hope.” 

At first, Diana said her family felt apprehensive. Being originally from Mexico, they feared that their language and culture might not be considered within the complicated surgical discussions.
 
“All my family was kind of worried about not fully understanding what was happening,” she said.
 
From the moment they arrived at The Chicago Institute, Diana said those fears vanished.
 
“They always had the time to describe the process with every single step,” she said. “Even if I had the same question over and over, they were so patient to go over it again. The team — every single person — was truly wonderful. All the doctors, nurses, social workers and even the front desk just had incredible professionalism, kindness and compassion.” 

In December 2022, surgery day came. While Diana was under anesthesia, fetal surgeons at Lurie Children’s carefully used small fetoscopic tools to repair Angel’s spinal cord in the womb. 

When Diana woke up to hear the surgery was a success, she was overwhelmed with emotions. 

“They were taking care of my emotions as well, even when I only cared about my son's health,” Diana said. “Me, my family, my baby — we were just always supported.” 

Spending the Holidays with Family

For Diana, the journey was emotional in more ways than one. Earlier that year, her mother, Elvia, had been diagnosed with stage 4 brain cancer. Elvia received permission from her neurosurgeon to travel to Chicago to be with Diana for the surgery.

The family stayed together at Ronald McDonald House Chicago together for one month, where they celebrated the holidays together. Angel’s future godmother Rosy also drove three hours into the city to visit them during their stay. 

“It was a great emotional support,” Diana said.

When Día de Los Reyes, a Mexican Catholic holiday, was approaching, Diana expressed that she was feeling a bit homesick. Traditionally, the day is celebrated by eating a sweet bread with candied fruits called Rosca de Reyes. 

When Diana arrived at her appointment that day, she was surprised and touched to find a slice of the bread waiting for her. 

“They made sure I had my Rosca de Reyes,” she said. “That made feel so just so cared for.” 

The Journey Continues in Arizona

After a month of follow-up appointments, the family flew back to Arizona. Not long after, Angel decided it was time to be born.
“He arrived premature, but he was so strong,” Diana said. “The doctors were just amazed at how well the scar was healing.”

Angel quickly captured hearts in the NICU. Throughout his recovery, the staff at their home hospital corresponded with the institute to collaborate on care. 

“All the NICU staff would come to meet Angel; to know the little boy who had fetal surgery in Chicago,” Diana said. 

In the months following, Diana traveled two hours back and forth every day between the NICU and the hospital where her mother was receiving treatment. Elvia met her grandson over Facetimes and got to know him through stories from Diana. Sadly, she passed away before she could meet her grandson in person. 

“Angel is what keeps me motivated,” Diana said. 

Moving Forward with Courage and Care

Now, Angel is a strong, joyful three-year-old. He attends preschool and is making steady progress in physical therapy, speech therapy and occupational therapy. He loves music, nature, trains and cars. 

“He's so strong, physically and emotionally,” Diana said. 
 
The fetal surgery reversed Angel’s hydrocephalus, preventing the need for an additional procedure. He uses orthoses (AFOs) and hip-knee-ankle-foot orthosis (HKAFOs) and is working on his ability to walk with them.  
 
“It’s wonderful to see the benefits of this procedure with a patient like Angel,” said fetal neurosurgeon Dr. Robin Bowman. “Children who have spina bifida repair in-utero have shown increased leg function, less need for hydrocephalus repair and improvement in brain imaging.”  

Outside of physical therapy, Angel is able to crawl and use a wheelchair, which he loves to take outside.
 
“He calls his wheelchair a ‘bike’ — he loves to be around the community in the ‘bike,’” Diana said. “He has been doing wonderful.”

When asked what she would say to other parents receiving a similar diagnosis, Diana emphasized the importance of prioritizing mental health. 

“I would say to take time to go to therapy, maybe, to heal the grief of the process,” she said. “Don't let your fear stop you from pursuing your journey, your dreams, your child's future.” 

Diana said that the trust she felt in her medical team and the love for her family helped carry her through. 

“Never stop believing in your child, in this place, in the doctors and in the path of life,” she said. “I know it's scary receiving a diagnosis. But Lurie Children's, it's an incredible place to treat complex conditions. So, if they believe that something is possible, if the doctors say that it's possible — it's going to be possible. Just believe in that.” 

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