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The team tackles such tasks as doctor referrals, insurance authorizations and medical supply orders. вЂњThese expanded services are a bridge for families to go from the newborn intensive care unit to the clinics where they will receive long-term care.вЂќ вЂњParents struggle with obstacles to care and need an advocate who can guide them in the difficult early years of a baby with a complex diagnosis,вЂќ says Kristi Boles, MD, medical director of the Spina Bifida Clinic at Phoenix ChildrenвЂ™s. Care coordinators now shepherd families through the first years of a childвЂ™s life.

Thanks to a generous donor, in August 2021, the Fetal Care Center expanded its concierge services to support families after their newborn is discharged.

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LaurelinвЂ™s concerns were heard вЂ“ and perfectly aligned with the Fetal Care CenterвЂ™s vision to provide a full continuum of care from prenatal to postnatal. So, she advocated for a similar model to support families like hers, not only before the birth of their child but also afterward. The concierge approach to care Laurelin and her family experienced at Phoenix ChildrenвЂ™s before NorahвЂ™s birth was a lifesaver. Norah needed care from experts in neurosurgery, orthopedics, urology, and physical and occupational therapy, to name a few. Laurelin quickly realized how much support she would need to coordinate NorahвЂ™s ongoing care with medical specialists. Within days of her surgery, Norah returned to Phoenix ChildrenвЂ™s to receive ongoing, specialized care close to home. вЂњIt was the best-case scenario for results of the fetal surgery.вЂќ вЂњThe best news came when the neonatal team informed us that they could not find any nerve damage and that she did not at that time have any buildup of fluid in her brain,вЂќ Laurelin says. The surgery was a success, and Norah was delivered at 37 weeks with limited complications. The nearby Ronald McDonald House became their home for three months.

In December 2019, the family travelled out of state to have the procedure performed. That's a hard pill to swallow without any guarantees.вЂќ вЂњThere was a chance the surgery could go wrong, meaning danger for both Norah's health and my own. вЂњMaking the decision for fetal surgery was extremely difficult, and those few days were some of the most turbulent of my life up to this point,вЂќ Laurelin says. Relying on their faith and their confidence in Phoenix ChildrenвЂ™s neurosurgeon Jennifer Ronecker, MD, the couple decided to have surgery performed on Norah while she was still in the womb. NorahвЂ™s parents only had a few days to make their decision because the in-utero procedure must be performed before 26 weeksвЂ™ gestation. While fetal surgery for spina bifida does not cure the condition, research shows that in-utero surgery may improve a babyвЂ™s outcomes. Laurelin and her husband, Jordan, learned that NorahвЂ™s spinal defect would have to be corrected, and doctors could perform the surgery in utero (in the womb) or after NorahвЂ™s birth. Additionally, the team collaborates with each familyвЂ™s chosen obstetric and maternal fetal medicine providers to help ensure a safe pregnancy and delivery. The Fetal Care team supports families through every aspect of their babyвЂ™s individualized care plan вЂ“ from initial testing and diagnosis to comprehensive treatment and ongoing support. The family sought guidance from the health systemвЂ™s Fetal Care Center. Laurelin was referred to Phoenix ChildrenвЂ™s, where fetal magnetic resonance imaging (MRI) confirmed the diagnosis. вЂњI worried this was somehow my fault.вЂќ A Network of Care Before Birth вЂњOur initial reaction was heavy anxiety about the unknown for Norah,вЂќ Laurelin says. Complications may include walking and mobility problems, bowel and bladder dysfunction, and/or accumulation of fluid in the brain. The condition can range in severity, depending on the size and location of the defect. Norah became a Phoenix ChildrenвЂ™s patient before she was born.Дuring a routine ultrasound 20 weeks into her pregnancy, Laurelin learned that her baby, Norah, had spina bifida вЂ“ a condition in which the spine and spinal cord donвЂ™t develop properly.Д®ach year, about 1,500 of the 4 million babies born in the United States have spina bifida, according to the National Organization for Rare Diseases. An Early Spina Bifida Diagnosis Signals the Need for Prenatal Medical Intervention