Meet Victoria, your Summer Scamper Patient Hero

Victoria’s mother, Karen, was 20 weeks pregnant when she and her husband, Angel, received devastating news. Their baby was diagnosed with spina bifida, a condition where the spine and spinal cord don’t form properly. Without intervention, the baby may never be able to walk, may accumulate fluid on her brain, or have other life-long complications.

Karen and Angel were still reeling as they met with Mark Boddy, MD, director of the Stanford Children’s Health Salinas Perinatal Diagnostic Center. Dr. Boddy gently walked the couple through the diagnosis and offered their first glimpse of hope. He described a new partnership between Lucile Packard Children’s Hospital Stanford and Texas Children’s Hospital. Babies like Victoria were undergoing corrective surgery—while still in their mothers’ wombs.

What happened next was a whirlwind of travel and extraordinary care through extremely difficult circumstances for the young family. To see the results that Dr. Boddy describes as “incredible,” check out our kids’ fun run on June 18.

Karen and Angel put their trust in the Stanford Children’s Health and Lucile Packard Children’s Hospital Stanford team and took a leap. Karen, just over halfway through her pregnancy, boarded a plane for Texas, which was the site for the joint procedures conducted by experts from both hospitals. Another key member of Karen’s care team was Yair Blumenfeld, MD, associate professor of obstetrics and gynecology (maternal-fetal medicine) at Stanford University School of Medicine. At the time, Blumenfeld was learning new in utero surgery techniques that he could bring back to Stanford.

In Karen’s case, the surgery was fetoscopic, meaning her abdomen was opened and two small incisions were made in her uterus through which the surgeons repaired Victoria’s spine.

“Dr. Blumenfeld introduced us to the team at Texas Children's,” explains Karen. “He collaborated with the Texas doctors to walk us through the information prior to the procedure, and then he was present and assisted during the surgery and was part of my post-op care team.”

Following the surgery, Karen stayed in Texas, trying to maintain her pregnancy as long as possible so Victoria could continue to develop in utero.

Ultimately, Victoria had other plans, arriving nine weeks early just before Christmas. As fate would have it, Angel, who had gone back to California for a time to work, had just returned to Texas to celebrate Christmas with his family and was present at Victoria’s birth.

After a one-month stay in the NICU in Texas to help her learn to breathe on her own, Victoria was able to fly home with her family. Unfortunately, Victoria’s fragile lungs were no match for airplane germs, and shortly after she arrived home in California, she was admitted to Packard Children’s with a severe respiratory virus infection. Our neonatology teams went to work caring for tiny Victoria in isolation until she was well.

Since that first stay at Packard Children’s, Victoria has continued to be seen by our Spina Bifida Clinic and received intensive physical therapy to help her with balance and muscle strength. She was able to walk with a walker at 1-and-a-half years old, and the day before the two-year anniversary of her in utero surgery, Victoria did something many children with spina bifida never do.

“I can’t describe the moment,” says Karen. “We didn’t know if Victoria would ever walk on her own. She took her first unassisted steps and looked around at all of us, as if she was asking, ‘Why are all of you crying?’”

Now an active 6-year-old, Victoria loves to play with her siblings and is playing soccer—another amazing milestone for someone with her condition. Karen and Angel are deeply grateful for everything their care teams have done to bring Victoria this far.

“We wonder what she would have been like without the surgery,” Karen says. “What we’re sure of is that she has better circumstances now. We are very thankful that we were introduced to the doctors who made such a difference for us.”

“It’s such an honor and privilege to help families like Karen, Angel and Victoria,” says Dr. Blumenfeld. “At Packard Children’s we are always looking to advance the field, develop national and international collaborations, and provide the best possible care for our pregnant mothers and their children. We look forward to seeing Victoria grow and so glad that they are a part of our extended family.”

Your support ensures that babies like Victoria and their families have access to the latest research and the best care. Thank you for being there for Victoria, even before she was born. Come join this extraordinary little girl at the 2022 Summer Scamper.