National Prematurity Awareness Month has a special meaning for two 24-year-olds
In the United States, at least one in 10 babies is born preterm, or at less than 37 weeks. With prematurity comes a host of possible immediate health complications, and babies may have long-term developmental challenges, too—especially if they are born extremely early. National Prematurity Awareness Month is honored every November to shed light on the needs of premature babies and their families and to raise awareness of the importance of quality medical care for these preemies.
It’s a month that means a lot to 24-year-old Juliana Pasqualucci. In 1999, she and her twin sister, Isabella, were born early, at 27.5 weeks’ gestation at Stanford Medicine Children’s Health. Juliana weighed just 2 pounds, and her twin weighed 1 pound, 15.5 oz. “Our dad’s wedding band fit around each of our wrists,” she says. “We were so small that our preemie clothes would fit on a doll.” The twins were in the hospital for three months as Stanford Children’s neonatologists worked to get their breathing, GERD, apnea, and other issues under control.
Highly specialized care for tiny babies
Today, the twins are healthy young adults who greatly value the care they got as infants. “Particularly on our birthday, we take a moment to remember how far we’ve come,” Juliana says. She is still struck by pictures of herself and her twin from that time—ventilated and emaciated. “Looking at photos of us, I’m just amazed,” she says. “I’m told that technology was just coming around at that point, and it wasn’t where it’s at today.”
Since Juliana and Isabella’s stay in the Neonatal Intensive Care Unit (NICU), “massive changes and advances have been made,” says Susan Hintz, MD, MS, director of the Fetal and Pregnancy Health Program at Stanford Children’s. “Some extremely preterm babies born 24 years ago would have been considered impossible to save, and that’s now shifted,” she says. Research done by Stanford researchers, including Dr. Hintz, shows a significant improvement in survival of babies born at less than 28 weeks, compared with the past.
At Stanford Children’s, specialty care for high-risk infants has evolved over this time. For example, the NICU now includes a special small-baby unit, called the Nest, for babies born before 29 weeks’ gestational age. In this dedicated space, a specialized team cares for the smallest preemies, using specially designed protocols to protect their fragile brains, advanced equipment to help support their lungs and special feeding and nutrition approaches to help babies grow.
Similarly, Stanford Children’s created one of the first Neuro-Neonatal Intensive Care Units (Neuro-NICUs), where babies who are premature or who have critical illnesses are cared for by a specially trained team that works to prevent brain injury and to promote brain development.
Other subspecialized neonatal care programs at Stanford Children’s help babies survive and thrive after being diagnosed with BPD, PDA, and other conditions. Babies with bronchopulmonary dysplasia (BPD) may need ongoing mechanical ventilation to support breathing. They can also develop pulmonary hypertension (PH), which is high blood pressure in the lungs. For these at-risk babies, there’s the Cardiac and Respiratory Care for Infants with BPD (CRIB) Program. Preterm babies may also need treatment from the multidisciplinary Preterm Patent Ductus Arteriosus (PDA) Closure Program at Stanford Children’s, which offers state-of-the-art treatment of PDA with highly specialized PDA device closure technology suitable for tiny infants. “Having specialty programs with focused attention on leading-edge treatments, and the unique needs of babies who are born extremely preterm and extremely low birth weight, allows us to provide the absolute best of the best of care,” says Dr. Hintz.
Advances in family-centered and long-term care
For Juliana and Isabella, everything came more slowly, including walking and talking. They both grew up with exercise-induced asthma, and Juliana needed extra support for her low muscle tone and to keep weight on her skin-and-bones frame. “We were constantly going to the pediatrician,” she remembers. In elementary school, Juliana was diagnosed with a learning disorder, which she had to work hard to overcome. It wasn’t until high school that she felt fully mentally and physically caught up.
Juliana’s experience illustrates why Stanford Medicine Children’s Health has created several follow-through programs for children after they leave the NICU. As more babies born very early survive, there’s been an increasing need to give them follow-up care as they grow to help them thrive later in life as well, says Dr. Hintz. Nowadays, when extremely preterm babies leave the NICU, they are referred to the High-Risk Infant Follow-Up program, which helps families monitor their child’s development through age 3. Other programs, like preemie graduate services, address behavioral, developmental, and educational concerns in older children.
A second major change in neonatal care at Stanford Children’s is based on the recognition that parents of children in the NICU need to be healthy and bond with their baby while in the hospital as well. “We were dedicated to family-centered care when the [Pasqualucci] twins were in the hospital, but this has become an area of critical focus,” says Dr. Hintz. “We have family-inclusive rounds, our research is increasingly focused on parents and families, and our NICU team strives to integrate parent and family voices in care to improve outcomes for both the baby and the family,” says Dr. Hintz.
This includes a focus on the importance of skin-to-skin care and building a mental health support program for parents of babies in the NICU. The innovative program aims to help reduce parents’ symptoms of trauma, anxiety, and depression as well as strengthen the attachment between them and their babies.
From the NICU, out into the world, and back
The Pasqualucci family moved from California to Connecticut four months after the girls were able to leave the NICU. Over the years, the twins’ parents told them a lot about their time at Stanford Medicine Children’s Health. “I remember my mom talking about the overwhelming support she got from the nurses when she was distraught and worried about whether we’d survive,” says Juliana.
Some of the Pasqualuccis’ extended family lived in Connecticut at the time and couldn’t make the trip to California, so the twins’ dad made a home video capturing a typical NICU day to send to the relatives. This video had a lasting impact on both of the girls, who watched it many times as they grew up. Juliana could see the way her mother and father looked to the nurses for support and how they responded. “The nurses were so spirited and upbeat,” she says. It became a huge factor in Juliana’s decision to go into nursing, with her goal of working in a NICU.
The video was originally on a compact disc, and Juliana had it transferred to her phone to make sure that she never lost it. “I still watch it every time I go through a tough situation,” she says. “Now that I’m in nursing school, when I need a source of inspiration, I watch it over and over to see the kind of care we were getting and the support we had. We will always owe our thanks to those neonatologists and nurses who worked with us night and day.”
Isabella is following a similar health care career path and is in school to become a physician’s assistant. “We both want to give back because we know the struggles our parents went through and what we went through, and I want to help others going through a difficult time,” she says. “There is comfort and hope not going through it alone.”
Juliana thinks a lot about how her own experience can be a source of inspiration for families of premature babies. “To parents out there with preemie children, I’d say, ‘Stay hopeful.’ I’d remind them to lean on the nurses and trust in their care team,” she says. “Here I am—able to talk, walk, do everything normally. Sometimes life doesn’t go in the picture-perfect direction, but at the end of the day, those things make us stronger.”
Research Roundup
The neonatologists at Stanford Medicine Children’s Health are also faculty members at the Stanford School of Medicine. As faculty, they conduct clinical trials and research to improve outcomes for newborn babies, and they are involved in large, national research studies. Stanford is one of only 15 academic centers across the country that participate in the Eunice Kennedy ShriverNICHD (National Institute of Child Health and Human Development) Neonatal Research Network. The focus of some of their trials and observational studies has been on routine neurodevelopmental follow-up care for infants born before 27 weeks’ gestational age through age 2 and for some studies through school age.
The March of Dimes Prematurity Research Center at Stanford University launched in 2011 and became the country’s first transdisciplinary research center dedicated to identifying the causes of premature birth. Here, more than 130 Stanford scientists, in fields ranging from neonatology and genetics to computer science and AI, investigate ways to reduce the rate of preterm birth and shrink the disparity in prematurity among racial and ethnic groups. Members of this group collaborated with other researchers from around the world to develop a first-ever test that detects with 75% to 80% accuracy whether a woman’s pregnancy will end in a premature birth.
Dr. Hintz is passionate about ensuring that the smallest and earliest-born babies receive appropriate follow-up care. She leads efforts within the California Perinatal Quality Care Collaborative (CPQCC), a group of California NICUs and high-risk infant follow-up clinics that share a common goal to improve the quality and equity of health care delivery for California’s most vulnerable infants and their families. Dr. Hintz is also medical director and principal investigator for the statewide High-Risk Infant Follow-Up Quality of Care Initiative, which is a collaborative partnership between the CPQCC and California Children’s Services.
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