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Lucile Packard Children’s Hospital recognizes that a healthy start for children begins with outstanding care for expectant mothers. The following stories of four local women, each of whom passed through the Hospital on one day this spring, provide a glimpse of how Packard Children’s advances care for mothers and babies alike, and touches the lives of hundreds of families each and every day.
On the second floor, in the Labor and Delivery Unit, Michelle Craig has just given birth to her first child, Avery, a healthy baby boy. She and her husband, Mike Horowitz, are ecstatic, proud—and relieved. Avery’s birth is a happy and long-awaited ending to a harrowing journey.
Two months prior, Michelle was wrapping up her workday at Google when she suddenly began bleeding profusely. Seven months pregnant, she was suffering a severe hemorrhage, and she was rushed to Packard Children’s.
Until that day, Michelle’s pregnancy had been completely uneventful. The bleeding occurred without any warning, putting both her life and the life of her baby in danger.
Michelle’s care team stopped her early contractions and diagnosed her with placental abruption, in which the placenta separates prematurely from the uterus. She had lost almost a liter of blood, an unusually high volume even compared to other high-risk cases seen at Packard Children’s.
Based on the severity and sudden onset of the hemorrhage, Michelle’s doctors worried that the risk of another incident occurring without warning was too great for her to go home, and would pose too much danger to her and the baby. There was no telling what might happen if she didn’t make it back to the hospital in time.
“Michelle’s case highlights the delicate line we walk in high-risk obstetrics, dealing with two lives,” says Yasser El-Sayed, MD, her obstetrician and associate chief of maternal-fetal medicine. “Our ability to diagnose, much less control, what will happen with a developing life is actually quite limited. Given our inability to predict what would happen, we opted to keep her in the hospital for the duration of her pregnancy.”
“The doctors were very clear that Michelle was in a precarious situation,” recalls Mike. “It was hard for me to even leave her side, and any phone call from her nearly gave me a heart attack because I feared the worst.”
But as Michelle points out, they all expected the baby to be born soon. “I had no idea how long my hospital stay would end up lasting,” she adds.
Days turned into weeks, then into months. In total, Michelle endured 66 long days at Packard under careful watch. To break up the tedium, Mike visited her three times a day, bringing her restaurant meals, wheeling her to the roof for fresh air, and trying to keep up her spirits. The nurses gave them quick training on infant care, since Michelle’s hospitalization prevented them from attending classes to prepare for their baby’s arrival.
Thanks to close monitoring by the high-risk obstetrics team, Michelle was able to carry Avery to full term. He weighed in at a solid 8 pounds, 4 ounces.
“We’re totally overwhelmed,” says Mike, after Avery’s long-awaited arrival. “It was a long road, from the first night we spent here, worrying. He’s absolutely perfect—10 fingers and 10 toes—and huge.”
Down the hall, just outside the Neonatal Intensive Care Unit (NICU), Leslie Ballinger is trying to compose herself. A loyal donor to Packard Children’s, Leslie is touring the Hospital with a friend who she hopes will also become a supporter. But when their tour arrives at the NICU entrance, Leslie can’t bring herself to go in. Even after 23 years, it’s too difficult for her to be surrounded by fragile newborns and beeping monitors.
In 1988, Leslie’s first son, Court, was born at Stanford Hospital, three months premature. During her pregnancy, Leslie had been diagnosed with HELLP syndrome, a complication of preeclampsia (pregnancy-induced high blood pressure). Her baby arrived much earlier than expected and with little warning.
Court spent his first eight weeks of life in the NICU. That he survived at all was remarkable.
Leslie and her husband, Doug, still vividly remember the constantly beeping monitors and the glaring lights of the NICU. In those days, parents often were not allowed to have contact with their premature babies. The first time Court could be held was on Doug’s watch one evening—at six weeks of age.
A lot has changed since then, notes David Stevenson, MD, the Harold K. Faber Professor in Pediatrics. There are better diagnostic tools, monitors, and treatments. Lighting in the NICU is now cycled to replicate day and night, parents are encouraged to touch, hold, and talk to their babies, and every effort is made to give the fragile infants more moments of peaceful rest.
As a child, Court was diagnosed with cerebral palsy, an eye condition called strabismus, and learning difficulties. He learned to crawl and walk later than other children, but overcame many of the muscular issues associated with cerebral palsy and was a happy and active toddler. But as he started grade school, he began to struggle. It took him longer than other students to do the same math problems. And he needed speech therapy for an awkward stutter that made him shy and nervous around others. As a teenager, his social anxiety made it difficult to build friendships, and he had a negative view of what he could accomplish in life.
Leslie can still remember the frustration and pain of seeing her child struggle. There was little in the way of support for parents raising children with special needs and trying to navigate complicated services. To ensure that better follow-up care and coordination were available to other families facing similar challenges, Leslie and Doug supported Preemie Graduate Services at Packard, which helped parents access continued care for children born prematurely.
In 2004, the Ballingers, along with Leslie’s parents, Ann and Bill Swindells, took their investment one step further by establishing the Ballinger-Swindells Endowed Professorship in Developmental and Behavioral Pediatrics. Their gift led to the recruitment of Heidi Feldman, MD, PhD, professor of pediatrics, to direct the new Developmental-Behavioral Pediatrics program at Packard Children’s.
“The Ballingers really took the lead in helping us develop our high-risk follow-up clinics and build interfaces with the community,” notes Stevenson. “Now, when kids leave our nursery they have places to turn to for assistance in overcoming the challenges they may face.”
Luckily for Court, high school was a turning point for him. He attended a school on the East Coast where he met other students facing similar challenges, and finally began to come out of his shell.
Court is now thriving as a young adult. Though the memories of the NICU are still a little too vivid in Leslie’s mind, she is hopeful that things are somewhat easier for other families as their children grow up.
Inside the NICU, Eva Lagunas is beaming with pride. She has come in to share photos of her youngest son, David Luna. She greets the nurses with hugs. “They are like family to me,” she says.
David has come a long way from his days in the NICU. Born in 2009 at 26 weeks, David weighed less than 2.5 pounds. He suffered from respiratory distress syndrome, apnea of prematurity, gastroesophageal reflux, and a significant hemorrhage in his brain. At two weeks old, he had deteriorated to half his birth weight, and doctors told Eva and her husband, Miguel Luna, that if David survived, he could have severely impaired vision and hearing, and might never walk.
It wasn’t until four long months later that Eva and Miguel were finally able to take him home for the first time.
Today, the nurses are stunned by David’s progress. His health is good, and though his development is somewhat delayed, he is now walking, beginning to talk, and slowly catching up on other skills. Eva mentions proudly that he loves to eat—everything except zucchini—and is even a bit taller than a neighbor of the same age.
It took a lot of determination, hard work, and prayer to get her son to where he is today, she says. David has undergone intensive therapy to learn basic functions like grasping and talking.
Fortunately, David has benefited from the generous investment the Ballinger family made in 2004. Today, Packard’s Developmental-Behavioral Pediatrics program provides families like David’s with the structured support, follow-up, and coordination they need to tackle their children’s disabilities.
“David has some challenges but has done well,” Feldman observes. “It’s important that we connect families like his with services, either at Packard or in the community close to their homes, to monitor and assist with their development.”
For her part, Eva has taken full advantage of the resources available to help David grow. Their busy weekly schedule consists of three sessions of occupational and physical therapy through California Children’s Services, two sessions at an early intervention program where he socializes with other children, and in-home visits by a speech therapist and a teacher to build David’s vocabulary and cognition. She keeps a positive outlook, but is not afraid to speak up if she feels his needs are not being met. When she felt that one program was not the right environment for him, she immediately sought out a better fit.
“We have to be our children’s voices,” Eva says.
Today, she adds David’s photo to the NICU wall, and takes a moment to encourage other Spanish-speaking parents who look anxious and frightened. “I want them to know that at Packard, their baby is in the best place possible,” she says. “To me, the NICU is a place of life, hope, and love.”
On the ground floor, Sarah Jones and Andy Sharp are waiting nervously as their 7-month-old son, Nicholas, undergoes his third surgery since birth. It is the latest bump in what has already been a long and arduous road for their first child.
Last summer, while Sarah was pregnant with Nicholas, her 26-week ultrasound revealed an excess of amniotic fluid, which indicated that the baby was not swallowing as he should. Her doctors suspected duodenal atresia, in which the first part of the small bowel is obstructed, preventing passage of the stomach’s contents.
Sarah was referred to Packard’s Center for Fetal and Maternal Health, which assembled a team consisting of a high-risk obstetrician, a neonatologist, a genetic counselor, a medical social worker, and a surgeon to develop a care plan for her and the baby.
“We try to put the pieces of the puzzle together for parents, so that they’re able to understand and prepare as much as possible for what will happen in the weeks and months—sometimes years—ahead,” says Susan Hintz, MD, medical director of the Center for Fetal and Maternal Health and an Arline and Pete Harman Endowed Faculty Scholar.
The team informed Sarah and Andy that their baby would likely need surgical repair shortly after his birth. “But even with all our technology, expertise, and imaging capabilities, we underscore that we still can’t perfectly predict what is to come,” adds Hintz. It turned out Sarah’s baby was unpredictable indeed.
Just three weeks later, in the middle of the night, Sarah’s water broke and she went into preterm labor. Sooner than anyone expected, she was admitted to Packard Children’s, where doctors stopped her contractions and kept her on bed rest for eight days. When her contractions began again the following week, her doctors found that the baby’s heart rate was dropping and determined that he needed to be delivered immediately via an emergency c-section.
“It all happened very fast,” Sarah recalls. “Twenty minutes later, Nicholas was here.”
Born at 30 weeks, Nicholas was a tiny 2 pounds, 14 ounces.
Fortunately for both mom and baby, their Packard care team already had a plan in place, and neonatologists and pediatric surgeons were ready to jump into action. Just after Nicholas was born, his doctors confirmed that he had duodenal atresia, which would need to be addressed immediately. And when attempts to intubate him failed, they suspected that he also had tracheo-esophageal fistula (TEF), an abnormal connection between his esophagus and trachea.
Surgeons Sanjeev Dutta, MD, and Matias Bruzoni, MD, operated on Nicholas that evening, successfully repairing the duodenal atresia and performing a temporary measure for TEF. Nicholas was not the smallest patient ever to undergo surgery at Packard Children’s, but was well out of the range of what most other hospitals are able to handle. His small size and prematurity, along with his two concurrent conditions, made his case particularly challenging.
“There’s nothing written in a textbook about how to deal with this sort of situation,” notes Dutta, an Arline and Pete Harman Endowed Faculty Scholar. “It takes the experience and innovation of a place like Packard to manage the nuances of caring for complex and rare conditions like what Nicholas had.”
Six weeks later, when he had grown a little bigger and stronger, Nicholas underwent his second surgery to fully repair the TEF. He stayed in the NICU for several more weeks, and finally went home last October.
“Our NICU nurses were simply amazing—both for Nicholas and for us,” recalls Andy. “The support they gave us, and their ability to advocate for him and help us understand everything was truly exceptional.”
At home, it was smooth sailing for a few months, until a checkup this January found that Nicholas’ head circumference had spiked considerably. A CAT scan showed that he had hydrocephalus, or excessive fluid around his brain, which would require a shunt to relieve the pressure.
Today, Sarah and Andy find themselves back at Packard as neurosurgeon Michael Edwards, MD, operates on Nicholas. Fortunately, the surgery goes smoothly, and by evening, Nicholas is in recovery, breathing on his own.
Michelle Craig reports that she and 4-month-old Avery are both doing great. He has already taken his first trip to Hawaii. Despite the event that landed Michelle in the hospital for 66 days, Avery has been nothing but healthy.
“Being in the hospital for that long was really awful at the time,” Michelle says. “But looking back now, I feel so lucky. I’m so glad I stayed. Everyone at Packard went above and beyond to take good care of us. We’re so grateful that it turned out so well.”
Leslie Ballinger is the proud mother of a college graduate. In May, Court received his degree in geography from the University of Denver. This summer, he volunteered at an orphanage in Tanzania, climbed Mount Kilimanjaro—the single best experience of his life, he says—and prepared to start a new job with AmeriCorps.
“Climbing Kili is one for the bucket list,” says Court. “It was just amazing and opened my eyes to what’s possible and what’s out there in the world. I can do so many things that I didn’t know I was capable of.”
Eva Lagunas is thrilled with her son’s continued progress. David, now 2, can point out animals in his books by name, dances happily anytime he hears music, and is eagerly practicing his newest skill—running. Eva credits the wonderful community programs, and a lot of prayer, for helping David come this far.
“We’ve had hundreds, thousands of people praying for David,” Eva says. “He is a miracle.”
And, after a rollercoaster year, Sarah Jones is breathing easier. A few days after his third surgery, Nicholas was back home again, though his doctors advised Sarah and Andy to keep him close to Packard Children’s at all times. In May, when Nicholas was 10 months old, they were given the green light to take him out of town for the first time.
In July, Nicholas celebrated his first birthday. An active child with enviable red hair, he stays busy exploring all his new toys. At some point, he will likely need another surgery to resolve one remaining issue. But for now, it’s not slowing him down much. For lunch, he enjoys two large servings of pureed fruits and vegetables, then gulps down a generous bottle of formula.
“It’s been quite an experience,” says Sarah. “We are so grateful for the amazing care we’ve received from everyone at Packard."