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 và Angel vẫn còn choáng váng khi gặp bác sĩ Mark Boddy, giám đốc Trung tâm Chẩn đoán Sơ sinh Salinas thuộc Bệnh viện Nhi Stanford. Bác sĩ Boddy nhẹ nhàng hướng dẫn cặp đôi qua quá trình chẩn đoán và mang đến cho họ tia hy vọng đầu tiên. Ông mô tả mối quan hệ hợp tác mới giữa Bệnh viện Nhi Lucile Packard Stanford và Bệnh viện Nhi Texas. Những em bé như Victoria đã được phẫu thuật chỉnh hình ngay khi còn trong bụng mẹ.
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.
“Tôi không thể diễn tả được khoảnh khắc đó,” Karen kể. “Chúng tôi không biết liệu Victoria có bao giờ tự đi được không. Con bé chập chững những bước đi đầu tiên mà không cần người đỡ và nhìn quanh tất cả chúng tôi, như thể đang hỏi, 'Sao mọi người lại khóc thế?'”
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.
“Chúng tôi tự hỏi không biết cô ấy sẽ ra sao nếu không có ca phẫu thuật này,” Karen nói. “Điều chúng tôi chắc chắn là giờ đây cô ấy đã có hoàn cảnh tốt hơn. Chúng tôi rất biết ơn vì đã được giới thiệu đến những bác sĩ đã tạo nên sự khác biệt lớn lao cho chúng tôi.”
“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.
