Julianne Sabatini and her husband, Michael, are parents to two daughters, Michaela, 4, and Raffaella, 1, who recently celebrated a birthday on Dec. 18, 2020. For the Sabatini family, celebrating this holiday season will be memorable for them. One year ago – Dec. 24, 2019 – they received the best Christmas gift when they brought their daughter home from Texas Children’s neonatal intensive care unit (NICU).
“It was a time of togetherness for our family of four, and one we will always cherish fondly this time of year,” Julianne said. “From welcoming baby Raffaella into the world a month early, to bringing her home on Christmas Eve, to finally meeting her big sister for the first time was a miraculous ending to our story.”
While both daughters have very distinct personalities, Michaela and Raffaella share more than just their sisterly bond – they were both diagnosed with spina bifida, a congenital defect of the spine. Unlike her sister, Michaela, who did not meet the criteria for fetoscopic surgery and underwent surgery at two days old to repair her spinal condition, Raffaella had spina bifida surgery at Texas Children’s Fetal Center®.
“When we learned our second daughter would be a candidate for fetoscopic surgery, we were so happy and very optimistic,” Julianne said. “We had our consultation at the Fetal Center when I was 19 weeks pregnant, and then five weeks later, on Sept. 30, 2019, our OB/GYN, Dr. Michael Belfort, and our neurosurgeon, Dr. William Whitehead, performed Raffaella’s in-utero repair at 24 weeks gestation.”
Julianne’s follow-up appointments consisted of twice weekly visits with her maternal fetal medicine team which included Drs. Magdalena Sanz Cortes, Alireza Shamshirsaz, Jimmy Espinoza, Roopali Donepudi and Ahmed Nassr. The team monitored Julianne’s pregnancy closely due to the potential risk of her delivering prematurely.
“Everything was going well until my follow-up ultrasound appointment the day before Thanksgiving when my doctors told me I had chorioamniotic membrane separation,” Julianne said. “While the baby was doing well, it was more of a watch and wait. My clinical visits were more frequent and I was told at any one of my appointments, I could be admitted to the hospital for the remainder of my pregnancy. The thought of spending the holidays in the hospital gradually began to sink in, which was difficult for me and my family.”
On Dec. 16, Julianne was admitted to Texas Children’s Pavilion for Women® after an ultrasound showed her chorioamniotic membrane separation was getting progressively worse. Soon after being admitted to the hospital, she went into labor. She was scheduled for a C-section with Dr. Sanz Cortes two days later.
“To prepare for the big day, I convinced my nurses I wanted to get my hair washed, blow it out, and put on makeup so I’d be ready for cute photos with my baby girl the next morning,” Julianne said. “However, my C-section happened a lot sooner than expected. It turned into an emergency situation pretty quickly after I began losing blood. I was rushed to the OR and delivered Raffaella via emergency C-section. Our daughter was born on Dec. 18, 2019, a few minutes after midnight. We were so excited to meet her.”
Since Raffaella was born one month premature – her due date was Jan. 15 – she spent one week in the NICU before the Sabatinis brought her home on Christmas Eve. They call “Raffi” their second miracle baby and are grateful to the entire team of physicians, nurses and staff who took incredible care of them.
“We had a great experience at Texas Children’s,” Julianne said. “The level of care the doctors, nurses and other staff put into each case amazed me. I am grateful to Dr. Sanz Cortes, our Pavilion for Women nurses, our NICU nurses and our neonatologist Dr. Rita Shah – who I call our Christmas angels – because they made it possible for us to bring Raffaella home for Christmas. I am also thankful to my entire fetal surgery team who took care of me throughout my pregnancy and enabled my daughter to reach her first milestones.”
Today, 1-year-old Raffaella is doing amazingly well. She can sit up, crawl, pull herself up and cruise. Her parents say she loves to explore and is a busy bee “reorganizing” the plastic bowls in the kitchen cabinets. So far, Raffaella is hitting the same milestones that babies who never had spina bifida hit at the same time. She and her big sister Michaela continue to undergo virtual physical therapy sessions to build their strength.
“It was tough when we received a double spina bifida diagnosis, but I wouldn’t change anything about our daughters,” Julianne said. “Mickie and Raffi have enriched our lives – they’ve taught us about love, perseverance and they amaze us every day with all they have accomplished. Spina bifida doesn’t take away who our girls are. It enhances who they are and reminds us every day that life is beautiful.”