Respiratory Distress Syndrome: John-Derrick's Story
Patient Story Highlights
- Anna and Stefan traveled to Florida while Anna was 28 weeks pregnant to enjoy a warm break from the snowy Canadian winter.
- Anna gave birth to John-Derrick 3 months earlier than expected and had to be rushed to the hospital. John-Derrick weighed a little over 3 pounds and was intubated in the NICU of Johns Hopkins All Children’s Hospital.
- John-Derrick had respiratory distress syndrome, but he was stabilized, and his parents were introduced to Carolyn Kelly, an Advanced Practice Registered Nurse from their hometown, St. John’s, Newfoundland, Canada, who offered specialized care to their son.
A new mother makes her way gingerly into the neonatal intensive care unit (NICU) of Johns Hopkins All Children’s Hospital, her partner at her side.
Anna and Stefan are looking for their boy.
There he is … John-Derrick.
He looks so fragile. Barely over 3 pounds. Surrounded by so much technology. He has been intubated and is doing his very best to breathe. Mom and dad can’t touch him, not yet.
The new parents still can’t quite believe they’re here. Surreal. Is this really happening?
“It’s overwhelming,” Anna says. “There are all these little beds lined up, with so many people working around them … all this equipment … and people with those wheelie things.”
Anna has never even broken a bone. She doesn’t remember ever seeing the inside of a hospital, certainly not one like Johns Hopkins All Children’s.
They are so far from home.
Actually, none of this was how they had imagined it.
How It Happened
It had been an awful winter back home. Anna and Stefan are from St. John’s, a small city on the island of Newfoundland in the most Easterly province of Canada.
Few Canadian winters are easy, but this had been one to remember. Debilitating snowstorms had forced the town into an emergency lockdown for the last 12 days. “Snowmageddon,” the locals were calling it.
“Let’s get out of here,” Stefan said to Anna, once the lockdown had been lifted. “Let’s run away to Florida for the week.”
Anna was about 28 weeks along, and this might be the last opportunity they would have to take a break before the baby comes. With her doctor’s approval, they traveled to Treasure Island in early February.
Anna and Stefan were very excited about her pregnancy. They’d been trying to conceive for the last three-and-a-half years. Stefan has a 14-year-old, but this was to be Anna’s first child.
A little time in the warm Florida air would be just what the doctor ordered… They could kick back, soak up some sun, and daydream about their new baby’s arrival — just 12 short weeks away.
Only, that’s not at all how things happened.
Change of Plans
There is a famous John Lennon quote that resonates — “Life is what happens when you’re busy making other plans.”
Sometimes babies have a way of ignoring all medical advice and coming into the world on their own terms — and in their own time.
John-Derrick entered on Feb. 9, three months sooner than expected — and within 24 hours of the time Anna had been rushed by ambulance from their beach condo to the hospital.
Considered an “extreme preemie,” the baby had been stabilized in the NICU as clinical staff worked to help his parents adjust to their new surroundings.
Anna and Stefan were introduced to their baby’s specialists — as they began to try to absorb the information being shared.
Their baby would be cared for by an entire team of experts, trained in providing highly specialized care for premature infants. The hospital’s NICU has a level IV designation from the American Academy of Pediatrics — the highest level available.
“Our health care system is so different from down here,” Stefan says. “Here, you have your primary physician, your neonatologist, your nurse practitioner, your nutritionist … so many. It was super-organized. Everybody is there for a purpose.”
Anna and Stefan would come to understand the value of that specialized care over time, but on this first full day in the NICU, they were still reeling, still coming to grips with all that had occurred.
Then, something special happened.
Anna and Stefan were introduced to their nurse practitioner, Carolyn Kelly, APRN. She greeted them with a generous smile and offered three simple words.
“I’m from home,” she said.
I’m from home. Not “I’m from Newfoundland,” or “I’m from St. John’s,” but “I’m from home.”
Anna gets emotional recalling the moment. “Those words I will never forget. It felt like a warm hug.”
Anna and Stefan recognized the accent, just a touch of the soft Irish lilt for which Newfoundlanders are known.
What are the odds?
What are the odds that a couple would travel to a different country, have an emergency early delivery, and wind up in a neonatal intensive care unit where their caregiver is from the same small Canadian town — nearly 3,000 thousand miles away?
In that moment, the tension of the day melted away for this new mom.
“It was honestly like … we’re going to be OK now,” Anna says.
Work to Do
Little John-Derrick was holding his own, but he had some work ahead of him.
He was treated for respiratory distress syndrome, a condition that occurs when babies aren’t in the womb long enough to benefit from the natural surfactant their lungs ordinarily make — a liquid which aids in their breathing.
Practitioner Kelly was there — along with the baby’s team of specialists — each step of the way.
She would answer every question, explain in patient detail every procedure, every test and celebrate every milestone with Anna and Stefan.
“We needed to see improved breathing, we needed him to be able to hold his body temperature, he needed to learn to eat well without complications, and just to grow a little bit,” Kelly says.
Anna and Stefan knew they were in good hands.
“When you are working with somebody who knows her job, it’s not hard to tell,” Stefan says.
The weeks of John-Derrick’s care in the NICU ticked by against the backdrop of the growing COVID-19 pandemic. It was difficult for Anna and Stefan not to be able to have family come and visit their new little one, but they understood why.
A physician had explained to them early on that the path for premature babies in the NICU was often more like a roller-coaster ride … not so much a straight trajectory up, but with some ups and downs along the way.
That would prove to be true on March 10.
Kelly had noted that John-Derrick’s temperature was down a bit. Then when a tiny speck of blood was noticed during a diaper change — the NICU team sprang into action.
“The speed that everything happened was so impressive. It made me feel like — they are so on top of this, they are so attuned to what’s going on,” Anna says. “We were scared to death, but whatever was going to happen they were a step ahead of it.”
Tests revealed John-Derrick had developed an early stage of something called “necrotizing enterocolitis,” an inflammation in the intestines that is common in premature babies and can be very serious if it’s not treated quickly.
John-Derrick was given antibiotics and, thankfully, the condition disappeared.
The Road Home
With every week now, John-Derrick was breathing better, learning to eat on his own, and putting on weight. It was exciting to see his progress.
“He’s a handsome and sturdy little fellow, now,” Anna says.
“I’ve treated him like my own …” Kelly says, “like I’d want my own baby to be treated.”
Anyone who knows Kelly knows she treats every baby like her own — like family. But it was hard to miss the bond that had formed between these Newfoundlanders.
Kelly and Anna would find themselves trading stories and memories from home and sharing laughs about local expressions that Floridians might find perplexing.
One day when the baby coughed after swallowing some food, Anna quipped to another attending nurse, “Must have had bones in it.”
“What are you talking about?” the nurse responded, with mild alarm.
It was just a funny old expression, something folks from Newfoundland say all the time … ’Must have had bones in it.’
Kelly could see that John-Derrick was doing well, and she knew it wouldn’t be long before his family could take him home.
But tradition holds that NICU clinical staff best not brag about a baby when they’re inside the room. No using the words “might be going home,” where the baby can hear it. Otherwise, their path might be longer. A harmless superstition — but why tempt fate?
Kelly would hint that John-Derrick was getting close to his discharge day, but she would say it creatively.
“I think our boy might be taking a little trip soon,” she’d offer.
Kelly tries to get home to St. John’s once a year to see her parents. Once traveling concerns from the coronavirus abate, she’s looking forward to that trip. Only this time, she’ll have an extra stop to make —to pay a visit to a beautiful, healthy baby boy — and the parents with whom she’s formed a lifetime bond.
“We’re leaving here with a special appreciation, not just for that relationship, but for what goes into a NICU,” Stefan says.
“We felt the clinical care was perfect,” Anna adds. “We believe 100 percent that we were supposed to be here at Johns Hopkins All Children’s. Everything happened exactly how it was supposed to, and that has truly helped us on our journey.”
On April 27 … two proud parents walked out of Johns Hopkins All Children’s Hospital with their son …. heading home.
It was John-Derrick’s original due date.
Sometimes the world has a way of righting itself.
Neonatology at Johns Hopkins All Children's Hospital
Babies who are born prematurely or who are critically ill need specialized care from an expert, compassionate team. The team at Johns Hopkins All Children's Hospital in St. Petersburg, Florida, includes more than 25 board-certified neonatologists who specialize in treating newborns who need advanced care. We also provide seamless access to specialty services and convenient follow-up care.