Honoring Prematurity Awareness Month
Fifteen-month-old Emiliana’s name means “to strive, or excel, or rival.” Her parents chose it well before she was born, and their choice turned out to be prescient. “She’s our little fighter,” says her mother, Christine Cassetta-Trog.
Emiliana was born extremely early, when Christine was 23 weeks and three days pregnant—still in her second trimester. Christine had gone to her local doctor, feeling that something wasn’t quite right, and she was shocked to learn that labor appeared to be imminent. She was quickly transferred to Lucile Packard Children’s Hospital Stanford, where the Level IV Neonatal Intensive Care Unit (NICU) was more equipped to care for a micro-preemie.
On that day, Christine was 22 weeks and six days pregnant, and every day she didn’t give birth meant that her baby had a better chance of survival. The NICU team visited Christine and her husband to prepare them for what to expect in the NICU. “I remember saying to them, ‘Nice to meet you. Hope I don’t see you anytime soon,’” says Christine.
Although joking helped to cut the tension, Christine and her husband knew the situation was serious. “The NICU team told us the grim reality of what might happen—that she might be born not breathing —and they explained how long they would try to resuscitate her before stopping,” she says. They also shared that the rate of survival is less than 50%, and the rate of complications can be high at this very premature age, and so they sought feedback from the family about their goals for Emiliana with respect to pursuing a trial of intensive care if the baby was born soon, and her outlook wasn’t good. “My husband and I looked at each other and without hesitation said, ‘If she will have any quality of life at all, do anything you can to save our baby.’”
The NICU roller-coaster
The medical team managed to delay Christine’s labor for four days, and then they performed an emergency C-section when complications necessitated it. Emiliana was born at just 480 grams. “When we talk about the edge of what we can do to save babies, Emiliana is it,” says Melissa Scala, MD, clinical associate professor of pediatrics and medical lead for Nest, the small baby unit in the NICU, which cares for these incredibly fragile preemies.
Every premature baby’s NICU journey is unique, but many follow a similar tumultuous path: one step forward, two steps back. When Emiliana was born, she came out strong. She was breathing on her own, and she even mustered a cry. Her skin was paper-thin. “I couldn’t hold her until she was 34 days old,” says Christine. After a positive beginning, she got very sick and went into renal failure. “She swelled up like a Thanksgiving Day float,” says Christine.
A major setback was an often-deadly bowel disease, necrotizing enterocolitis, or NEC, that strikes some premature infants. She weighed barely 3 pounds when it happened, so surgery was extremely risky. At the same time, an ophthalmologist discovered an eye condition that meant Emiliana had an 80% chance of going blind if she didn’t get eye injections the next day. A rapid sequence of events followed. Despite the risk, Emiliana had a surgery for NEC that removed some of her bowel, and she was able to have the injections to save her eyesight.
Emiliana’s bowel took many months to heal, which threw off her ability to feed. Breathing complications arose too, and she needed to be intubated and put on an oscillator for high-frequency breathing support.
Bright spots
After many long months at her daughter’s side dealing with the daily highs and lows, Christine was feeling the strain, and she leaned on the care team for support. “There were days that were tough, and none of us were sure if Emiliana was going to survive,” says Dr. Scala. “At every turn, I told Christine that her daughter was a fighter, and we were going to do everything we could to help her feisty little one get the best shot at life.”
The nursing team became an incredible support system for Christine while her husband stayed at home during the week for work. “Emiliana’s six primary nurses were the fairy godmothers of the NICU,” she says. “If you needed a cry, they cry with you; if you needed a hug, they hug you; if you needed a laugh, they laugh with you.”
Another silver lining was that Christine was able to quit her job and be involved in her daughter’s daily care. Dr. Scala credits the presence and engagement of Christine and her husband with helping Emiliana’s outcomes be the best they could be. “I wish that all families had the ability to do what her parents did,” says Dr. Scala. “We worked as a team to get her through the hospitalization.”
Home at last
Emiliana was born on July 22 and went home precisely seven months later, on February 22. She’s now 15 months old. As with most micro-preemies, milestones like crawling, sitting up, eating, and walking are happening on a different timeline. Still, her lungs are strong and she only needs to see a pulmonologist twice a year.
“After everything she went through, we feel so fortunate,” says Christine. “She’s a happy camper and has that fighter spirit. She loves zipping along on her walker.” Since this year’s NICU reunion at Packard Children’s Hospital couldn’t happen because of COVID-19, Christine sent the care team a slideshow of their family at home. Dr. Scala hopes to see them in person at next year’s reunion. “It’s so wonderful to see fruits of our labors and to connect with these families that we get close with,” says Dr. Scala. “To see these kids running around with ice cream smeared on their faces makes it all worthwhile and is a great joy.”
