NICU to Now: Jeremiah’s story
Meet Jeremiah
6-year-old Jeremiah is always singing. Sometimes he sings in Creole (which his mom’s Haitian family speaks), sometimes in English, sometimes in a language all his own. This curious, music-loving kid even found a way to hum when he had a tracheostomy (trach), a surgically created opening in the trachea that allows air into the lungs.
“His trach team said, ‘We’ve never heard a kid hum before!’” said his mom, Rebeca Duvert. “He always has a song.”
Rebeca and her husband, Jackson (Jacky), named their second son for the Bible verse Jeremiah 29:11. “He’s our daily reminder of God’s grace,” said Rebeca. “Because without Him placing these great doctors, nurses and medical advances in our path, Jeremiah wouldn’t have survived.”
“Normal until it wasn’t”
Rebeca had a healthy pregnancy until her 22nd week, when she began experiencing cramps. She checked in with her obstetrician’s office, increased her water intake and went on with her day. By that afternoon, as she was driving home from a prenatal massage, she knew something wasn’t right: The cramps were hitting every seven minutes and had spread to her back.
“That was the moment I started crying,” said Rebeca. She recognized the back pain from going into labor with Jeremiah’s older brother. She decided to drive straight to the emergency room instead of going home. “It was the longest drive ever.”
An occupational therapist with the St. Luke’s system, Rebeca headed to St. Luke’s North Hospital, where her doctor was fortunately on call. They slowed her contractions with medication and transferred her to Saint Luke’s Hospital of Kansas City on the Plaza. Jacky met her there.
The good news: Their baby’s heartbeat was strong, and he was doing well. The not-so-good news: Rebeca needed to go on inpatient bed rest to delay delivery as long as possible.
But Jeremiah had other plans. The next night, at 22 weeks and three days, Rebeca went into labor again and was rushed to a surgical suite.
An unexpected birthday
Samuel Lee, MD, was at Jeremiah’s delivery. Dr. Lee had just finished his neonatology fellowship at Children’s Mercy Kansas City and started working at Saint Luke’s that week. Dr. Lee helped Jeremiah enter the world...at around 1 pound and 10 inches long.
The team began resuscitation and rushed Jeremiah from the room. Rebeca asked her brother to take a picture of the baby. Then Jacky and Rebeca waited. Finally, a nurse came to bring them to the NICU.
“The nurse wheeled us over to where Jeremiah’s room was, but the curtain was pulled all the way, so we couldn’t see in,” remembered Rebeca. “As we approached his room, we heard a unanimous sigh, like everyone had been holding their breath and let it out all at once.”
Dr. Lee emerged and told them that Jeremiah was breathing now. It wasn’t until a tearful reunion for Jeremiah’s first birthday that they learned the rest of the story: Dr. Lee had tried to intubate Jeremiah many times and had finally succeeded as they were walking into the NICU.
Rebeca and Jacky got to say hello to Jeremiah for the first time.
“His skin was still translucent; his eyes were still fused,” said Rebeca. “And even though he was so tiny, he had all kinds of lines coming from everywhere.”
Jeremiah’s first months
“Jeremiah’s been a fighter since day one,” said Rebeca. “He’s like, ‘I’m here for a reason. I’m here for the ride.’”
The family settled into a routine: Rebeca spent her maternity leave at the hospital all day, every day. Jacky was there every minute he wasn’t at work or school. And Rebeca’s mom would bring Jeremiah’s older brother, JaNoah, as often as she could.
With a faithful cheering section, month by month, Jeremiah made progress. He gained weight, was held by his parents for the first time, drank his first drops of breast milk and eventually had his breathing tube removed. Just before he was 5 months old, the team thought Jeremiah could go home with supplemental oxygen.
Rebeca and Jacky were elated. They packed Jeremiah’s going home outfit and came to the hospital for equipment training. But that night Jeremiah’s oxygen levels dropped, and his heart rate and CO2 levels spiked.
“We were crushed,” said Rebeca. “We were so close. We could see the finish line. And here we are, back to square one, because we didn’t know what was going on with him.”
"I remember how devoted and loving his parents were despite all the difficulties of the NICU stay,” said Dr. Lee, who now works in Wisconsin. “It's tremendously hard for families, and his parents stand out for how they endured the ups and downs."
From NICU to NICU
Jeremiah needed advanced NICU capabilities to care for his increasing respiratory difficulties. Instead of going home, Jeremiah was transferred to Children’s Mercy, where his new care team at the region’s only Level IV NICU discovered Jeremiah’s lungs were collapsing every time he took a breath.
“St. Luke’s did a very good job helping him survive at 22 weeks gestation and being able to grow him well,” said Winston Manimtim, MD, Director of the Infant Tracheostomy and Home Ventilator Program, who said Jeremiah was transferred at just the right time for the CM team to provide respiratory support. “When he was transferred to us, he was ventilator dependent, and it was becoming clearer that he would need long-term ventilator support.”
That meant Jeremiah needed a trach. With a ventilator delivering air directly through the trach, Jeremiah could get enough air pressure to keep his tiny lungs inflated and decrease his CO2 levels. The trach would also free Jeremiah up for more developmental activities, like being held and playing on the floor.
Jeremiah also needed a gastrostomy tube, or G-tube, to make sure he was getting the nutrition necessary to grow. Rebeca and Jacky gave the green light, and Jeremiah had both the trach and G-tube surgeries performed at the same time. Afterward, his parents were able to see his face fully — without any medical tape — for the first time.
“He had the biggest cheeks,” Rebeca remembered.
Jeremiah turned a corner after these interventions. He started gaining weight again and began physical, occupational and speech therapy. His activity levels rose, and he started vocalizing more, which surprised and delighted his care team.
“His family was here so much and so involved in his care that they really helped the team get him stable,” said Neonatology Nurse Practitioner, Addie Begley, RN, MSN, NNP-BC.
Rebeca and Jacky started to prepare to take Jeremiah home. It took several months to put everything together: They took CPR training, found a company that could supply all the home ventilation and medical equipment Jeremiah needed, and were trained by the Children’s Mercy team to operate it. They secured in-home nursing help and even found a retrofitted stroller that could hold an oxygen canister. They got a full-size SUV to carry everything.
Finally, discharge day came. “It was amazing,” said Rebeca. “The whole ride home, Jeremiah was staring out the window and had the biggest smile on his face. I’m like, ‘You and me both kid!’”
Jeremiah had spent a total of 282 days in NICUs. Now he was home.
Thriving at home
The family was finally home, but they were never far from their Children’s Mercy team. “We typically see patients every month after they go home,” said Addie. “Families have access to us 24 hours a day, seven days a week. They can reach out to us for whatever concerns they’re having.”
At home, Rebeca and Jacky got more comfortable with Jeremiah’s medical equipment while Jeremiah continued his therapies and made quick work of the milestones he had missed while in the NICU.
“Where is time going?” Rebeca said of how fast the days flew. “Four months ago, you weren’t even rolling, and now we’re practicing standing!”
Over time, they needed less in-home nursing and more baby gates. Within a year of coming home, Jeremiah was walking.
“When he started walking, he didn’t want to walk,” said Rebeca. “He always wanted to run.”
They got him a helmet. Jeremiah was determined to speed through both the world — and his developmental progress.
“With his mom being an occupational therapist, they really worked on those oral feeds a lot,” said Addie. “He got his G-tube out and was eating all by mouth before he got his trach out, which is not the normal order.”
As his lungs strengthened, Jeremiah started to wean off his ventilator, then supplemental oxygen. By the time he was 2 years old, Jeremiah was repeatedly pulling his trach out. Rebeca told his CM team: “I think Jeremiah is telling us he’s over this trach business.”
They started the process of getting Jeremiah ready for decannulation, or trach removal. They began capping Jeremiah’s trach, so he could practice breathing with just his nose and mouth for longer and longer periods of time. By 2 ½ years old, Jeremiah was ready.
“That is quite impressive," said Dr. Manimtim. “The data from the national registry we participate in tells us the average time period when a kid like Jeremiah would be weaned off the ventilator is about 27 or 28 months, and the average time they get decannulated is close to 4 years of age."
“We were told he may not walk, he may not talk, he may not be able to feed himself, and here he is walking into an appointment to be decannulated,” said Rebeca. “That was a very happy day.”
“He’s everyone’s friend”
Today, Jeremiah is medically stable and has only been hospitalized once since leaving the NICU (for RSV in 2021). The family moved just north of Houston, Tex., in early 2022. Known as the one-man band, Jeremiah has grown into a sweet, curious kid. He loves taking his toys apart to see how they work and is quick to both ask questions and volunteer little-known history facts.
“He’s funny, he’s smart, he’s inquisitive,” said Rebeca. “He’s everyone’s friend.”
He has some ongoing health challenges and is facing them head-on in true Jeremiah fashion. When he was 4, Jeremiah was diagnosed with autism; an Applied Behavior Analysis program in their new hometown is helping him manage his big emotions. Jeremiah also works with speech and occupational therapists on school readiness and takes medications to treat ADHD and (recently diagnosed) seizures.
Rebeca reported that his new neurologist said he never would have guessed he was a micro-preemie if she hadn’t read his chart. They are grateful to the two NICUs that gave Jeremiah the chance to become the never-met-a-stranger kid he is today. The family visits Children’s Mercy when they are back in Kansas City and sends the NICU cookies and photos on Jeremiah’s birthday.
“I can never repay them for the gift they have given us in Jeremiah,” said Rebeca. “The care we received was top tier.”