"I was a new neonatologist at that time and had only been in practice for a couple of years," says Dr. Javed, who now is the division head and medical director of Neonatology with OSF HealthCare Children’s Hospital of Illinois in Peoria, Illinois.

"Nothing can quite prepare you for having a premature baby. It didn’t matter how much I knew. My wife's a pediatrician; it didn't matter how much she knew. It's terrifying, and those first moments when the baby is born and they're rushing you off to the NICU; it is a blur."

Despite his medical training, Dr. Javed says he struggled to process information during those early days in the NICU, when his now 13-year-old son was born at 32 weeks.

He estimates he truly absorbed only about 10-15% of what was being communicated to him and his wife. The experience gave him a new perspective on what families are experiencing during some of the most emotional moments of their lives.

"Sometimes as a provider, you feel like you want to give everything. But sometimes families just need time to digest what just happened," Dr. Javed points out, saying his experience has changed his entire care model.

Now his son is an energetic, on-the-go teenager that Dr. Javed jokes is the “life of the party.” He credits the NICU team that cared for him as a big part of that.

"It was a blessing in disguise early in my career. It changed how I communicate with families," Dr. Javed adds. "Those conversations that we have with families might be some of the most important moments each day for them. For the provider, you might be seeing 20 patients, but that family is waiting to hear about the next plan and the next decision."

Today, Dr. Javed leads a team at OSF Children’s Hospital that provides the highest level of neonatal care available. 140 pediatric physicians are involved in caring for NICU patients, Dr. Javed says, providing expertise across a wide range of specialties.

The hospital has been designated a Level IV NICU by the American Academy of Pediatrics (AAP), the highest designation for neonatal intensive care.

Level IV NICUs provide the most comprehensive care for premature and critically ill newborns. At OSF Children’s Hospital, specialists routinely care for babies born as early as 22 weeks' gestation.

What elevates a Level 4 NICU above other facilities is the breadth of specialized services available around the clock. OSF Children's Hospital offers comprehensive surgical support, including emergency and trauma, neurosurgery, orthopedics, ophthalmology and pediatric cardiac surgery, which includes congenital heart conditions.

Unlike facilities that may rely on visiting specialists, these experts are available as part of the hospital's care team every day.

While several hospitals in Central Illinois provide Level III neonatal care, OSF Children's Hospital is the only Level IV NICU between Chicago and St. Louis.

For babies born at 22 weeks, every organ system is still developing, creating significant medical challenges.

Their skin has not fully developed its protective outer layer, increasing the risk of infection. Their blood vessels are extremely small, requiring highly specialized intravenous (IV) access and monitoring.

Their lungs are also underdeveloped. At 22 weeks' gestation, the lungs are in a very early stage of development, making respiratory support essential.

The blood vessels in the brain remain fragile and can be prone to bleeding. The digestive system is also immature, making nutrition a major focus of care.

To support growth and development, many infants receive specialized IV nutrition and donor breast milk. Speech therapists also play an important role by helping babies develop oral motor skills needed for feeding.

Even the NICU environment is carefully designed to support development. Lights are often dimmed to create a neurologically appropriate setting that more closely resembles conditions in the womb.

While many NICU patients need only short-term support after birth, others require months of intensive care.

The average NICU stay for most infants is about two to two-and-a-half weeks. Most are considered transitional infants requiring short-term care who need additional monitoring or treatment after birth before going home.

The hospital also cares for approximately 60 to 70 of its smallest and most premature patients at any given time. Babies born before 30 weeks' gestation often remain hospitalized for four-and-a-half to five months, depending on the complexity of their medical needs. Advances in neonatal care now allow many of these infants born so early to both survive and thrive.

Supporting families is another critical part of NICU care.

Many families travel one to two hours for treatment and must balance hospital visits with work and other responsibilities. Care teams use tools such as telemedicine to help keep families connected and informed.

Dr. Javed says that OSF HealthCare partners with the Family Home and Ronald McDonald House in Peoria to provide low-cost or no-cost lodging options for families while their children are receiving care.

To learn more about NICU services at OSF HealthCare Children's Hospital of Illinois, visit here.

Video Interview Clips

NICU B-Roll

Natasha Noel, MD, is a pediatric cardiologist who’s been treating children with heart issues for more than a decade.

But in the past few years, Dr. Noel has seen a spike in high cholesterol with several kids she cares for. 

“It’s the diet with respect to fast foods, and the climate, especially in Illinois. Our long winter months mean less physical activity for the kids,” explains Dr. Noel. “There is a greater awareness of this condition, and young adults experiencing sudden cardiac death. It all goes hand in hand.”

With those factors in mind, OSF HealthCare Children’s Hospital of Illinois has opened its first pediatric lipid clinic at its location in Rockford at 444 Roxbury Road. The program is led by Dr. Noel, who is board certified in clinical lipidology.

The clinic specializes in caring for children with cholesterol concerns, focusing on lifestyle changes, nutrition counseling with dietitians, genetic testing and lipid testing as needed. The clinic offers in-person and telehealth visits.

The bottom line, says Dr. Noel, adults aren’t the only ones who experience high cholesterol.

“Children can have high cholesterol as adults, and it could lead to early cardiac disease over time,” says Dr. Noel. “But once found and diagnosed, there is management available. So, I say don't delay (seeking treatment).”

Cholesterol and triglycerides are fats, or lipids, in the blood. Dr. Noel says the body needs lipids and cholesterol, but at high levels it could cause damage, especially heart disease as the years go on.

A simple blood test can determine the child’s cholesterol results. It's recommended that children are screened or have their lipid levels checked between the ages of nine to 11, and then again at 17 to 21. However, Dr. Noel adds that if there are specific risk factors, then screening may occur more often or earlier, sometimes as early as age two. 

Genetic testing is important when it comes to diagnosing a familial lipid disorder.

“Screening is needed to identify that something is wrong and abnormal, because most of these kids are asymptomatic. Genetic testing comes in handy if we suspect something inherited like familial hypercholesterolemia,” says Dr. Noel. “It also helps us guide management as needed.”

Risk Factors 

Risk factors include genetics, diet and physical activity. Obesity, diabetes and lack of sleep can also increase cholesterol levels. If cholesterol problems are untreated, it can lead to plaque in the coronary arteries, which leads to cardiac disease and atherosclerosis (the buildup of fats, cholesterol and other substances in and on the artery walls).

Depending on the cause and severity, the treatment plan includes lifestyle and dietary changes, more physical activity and then medication.

Dr. Noel stresses that abnormal test results don’t always mean a child is ill or requires medication. That’s why she encourages daily physical activity at least three to five days a week. Walking, biking and swimming are some of the activities that can lower a child’s risk of cardiovascular disease.

Diet is another important factor. Parents can help their children by encouraging food low in total fat, limiting saturated fats, avoiding full-fat dairy and eating enough fiber. Vegetables, fruits and whole grains are all great options to increase daily fiber intake.

A primary care provider can perform the initial screening and if there is a concern, a referral will be made to a pediatric cardiologist. “I think most of them are comfortable with us taking over that care, especially if medication is needed,” says Dr. Noel.

For more information on cardiology or other child-related issues, visit the OSF Children’s Hospital of Illinois website. 

 

Interview Clips 

B-Roll 

John Greinwald Jr., MD, otolaryngologist at OSF Children’s Hospital, performed the first implants this month, giving local children access to the latest technology sooner than patients at other hospitals in the region.

The Cochlear Nucleus Nexa System features upgradable firmware, internal rewritable memory, and dynamic power management. These innovations allow patients to receive software updates and future improvements without the need for additional surgery. The system also securely stores a user’s unique hearing information, or MAPs, so it can be transferred to a new sound processor if needed. The system includes the smallest and lightest sound processors with all-day battery life, adaptive sound processing for clearer hearing in different environments, and a connected ecosystem for ongoing care and support.

OSF Children’s Hospital continues to establish itself as a surgical destination for pediatric care, providing access to the latest medical technology and specialized expertise for children and families throughout Central Illinois.

Video Interview Clips

B-Roll

Every year, more than 700 children in Illinois are diagnosed with cancer – an emotionally devastating experience for families. Childhood Cancer Awareness Month honors children affected by cancer and raises awareness for additional research and support.

The new name reflects the comprehensive care already being delivered to children with cancer and blood disorders in Central Illinois. It was chosen to better represent the full scope of services provided, from diagnosis through treatment, survivorship and long-term support, while highlighting the hospital’s role as a regional leader in pediatric cancer and hematology care.

The name change does not affect patient care, insurance coverage, physician referrals or the hospital’s affiliation with St. Jude Children’s Research Hospital in the Midwest. Families will continue to see the same trusted physicians, nurses and care teams.

Throughout September, Mission Partners across OSF HealthCare will proudly wear Paint the Town Gold shirts as a symbol of solidarity. The initiative also includes yard signs displayed throughout the community by Mission Partners, families and local businesses all month, the Murray Baker Bridge lit in gold on Monday, September 15, at 7 p.m., and a gold ribbon illuminated on the side of OSF HealthCare Saint Francis Medical Center every night throughout September. Community members are encouraged to wear gold and share selfies on social media using the hashtag #PaintTheTownGold.

The action kicked off Tuesday, June 24, with the Pro-Am at Metamora Fields Golf Club. Local participants have the unique opportunity to play alongside CBS NFL analyst and former Dallas Cowboys quarterback, Tony Romo, as well as rising stars from the ANNIKA Women’s All Pro Tour and the APT Men’s All Pro Tour, two prestigious developmental tours for future LPGA and PGA professionals.

On Wednesday, June 25, Romo visited OSF HealthCare Children’s Hospital of Illinois.

The competition runs Wednesday through Saturday, June 25-28, at both Metamora Fields Golf Club and WeaverRidge Golf Club, showcasing some of the brightest up-and-coming talent in the game.

File Video: Tony Romo visits OSF Children's Hospital of Illinois

File Video: Metamora Fields

PHOTOS: Tony Romo at golf tournament

That’s what jolted Stephanie Thomas awake late one night. Her 2-year-old son, asleep for only a few hours, suddenly let out a scream no parent ever wants to hear.

“I ran into his room, and he was in his crib, arching his back and letting out these awful screams. Then he faceplanted forward,” Stephanie recalls.

At first, Stephanie assumed it might be night terrors. But when the screaming stopped and her son’s breathing grew shallow, her instincts — and training — kicked in.

“It was an instinct to get CPR started right away.”

Stephanie, a clinical dietitian at OSF HealthCare Children’s Hospital of Illinois, had been Basic Life Support (BLS) certified for 10 years. Though CPR isn’t part of her day-to-day job, her muscle memory took over.

“I pulled him out of his crib and told Kris [her husband] to call 9-1-1,” she says. “I put him on the floor, tried to find a pulse, but couldn’t feel any breath movement. I started doing compressions.”

Her quick actions bought her son precious time.

Emergency responders arrived within four minutes, Stephanie says, and the child was rushed to the hospital. Over the next 11 days, he underwent multiple tests, including genetic testing. The diagnosis: Brugada syndrome, a rare but serious genetic heart condition that can lead to sudden cardiac arrest.

Just before being discharged, her son became the youngest child in the world to receive an extravascular implantable cardioverter-defibrillator (EV-ICD) — a device designed to monitor and correct dangerous heart rhythms without the risks associated with traditional internal leads.

A New Reality

Since that terrifying night, the Thomases’ world has changed. Their son has been hospitalized six more times. The first time he screamed again at home, it turned out his EV-ICD had fired — delivering a life-saving shock to his heart. Additional shocks have followed, some occurring during hospital stays.

The couple’s older child, as well as Stephanie and Kris themselves, underwent genetic testing to determine if they also carried the Brugada mutation. It’s a condition that often lies silent until it's too late.

Stephanie credits Sunita Ferns, MD, her son’s pediatric electrophysiologist, for tapping into a national network of experts to help guide his care. Dr. Ferns says Stephanie and Kris’ son is now “married to cardiology,” but is confident in the techniques and technology the Electrophysiology (EP) Lab at OSF HealthCare Saint Francis Medical Center has to treat him.

“We monitor these devices constantly. If we see any arrhythmia in the background, despite the medication he's on, we can offer him other technologies,” Dr. Ferns says. “Ablative technologies can help modify the substrate, which is the tissue that's responsible for the bad rhythm.” 

The Emotional Weight

Now, the Thomases are learning how to navigate life with a toddler who doesn’t fully understand what’s happening to him — but who knows something is different.

“Medication-wise, he’s a champ. He takes his meds every six hours — even in the middle of the night — without complaint,” Stephanie says. “But the hardest part is when he says things like, ‘I can’t use elephant blankie because it shocked me.’ He makes these associations between being shocked and the objects or places around him.”

Kris adds that one of the biggest takeaways from their experience is the importance of having an emergency plan in place.

“Who’s calling 9-1-1? Who’s doing CPR?” he says. “We never thought about any of that until we were in the middle of it.”

A Message for Other Families

The Thomases now speak about the importance of CPR training and being alert to warning signs in children that could indicate something more serious than a bad dream.

Aside from the importance of knowing CPR, Stephanie says another major lesson to be learned is to pay close attention to your children's behavior to see potential warning signs.

The journey is ongoing, but their message is clear: instincts, preparation and community can save lives.

To read more about Stephanie and Kris’ son’s journey, and to learn from his medical team, visit the OSF Newsroom.

Video Interview Clips

Related stories

Parents' fast actions lead to world-first heart procedure

The Thomas family, whose granddaughter is on the autism spectrum, recognized the need for sensory support in medical settings and made the contribution to improve the hospital experience for patients with autism and other sensory-processing differences. The carts will be available throughout the hospital, including patient rooms, the emergency department, outpatient clinics and labs and areas where children prepare for procedures or surgery.

“Our family is grateful to have the opportunity to partner together with OSF HealthCare to serve the neurodiverse pediatric population in Illinois,” said Susie Lotharius, daughter of Chuck Thomas. “We hope the Thomas Carts help foster a sense of calm and comfort to these children and their families.”

Most Thomas Carts are Vecta Deluxe Mobile Sensory Stations, designed to create a calming, multi-sensory environment with an interactive bubble column, color controller, fiber optic tails, and a projector for visual engagement. A couple of the carts will be Vecta Jr. models, a more compact option featuring a waterless hurricane tube, Bluetooth-compatible radio, and fiber optic tails for a soothing sensory experience.

The introduction of the Thomas Carts comes just ahead of Autism Acceptance Month in April, reinforcing OSF Children’s Hospital's commitment to supporting neurodiverse patients. The hospital is also home to OSF Autism Pathways, formerly known as the Autism Collective. OSF Autism Pathways provides care coordination, education and access to services for families navigating an autism diagnosis. More information can be found at OSF Autism Pathways.

Meg Zakrzewski, MBA, MSN, has been named president of OSF HealthCare Children’s Hospital of Illinois.

As president, Zakrzewski will be accountable for the direct oversight of clinical service operations within OSF Children’s Hospital in collaboration with the shared supporting service divisions and leaders at OSF HealthCare Saint Francis Medical Center. Additionally, she will be responsible for the financial performance of OSF Children’s Hospital, including identifying and responding to market conditions and developing and implementing appropriate plans, goals, budgets and policies.

Zakrzewski joins OSF HealthCare from Ascension St. Vincent in Indianapolis where she served as vice president of pediatrics and co-chairperson of the Ascension national pediatrics service line. She previously held leadership roles as the director for the pediatric service line at Dell Children’s Medical Center in Austin, Texas, and as manager of the pediatric service line at Joe DiMaggio Children's Hospital in Hollywood, Florida.

Zakrzewski succeeds Mike Wells who served as OSF Children’s Hospital president prior to being named president of OSF Saint Francis Medical Center.

“We are at an exciting and critical point in our development as a comprehensive children’s hospital. We are transforming health care in central Illinois with new programs and services for the most complex pediatric conditions,” said Wells. “Meg is well equipped to help us navigate this next phase of growth and I am excited to experience the positive impact of her leadership!”

Zakrzewski earned a Bachelor of Science in nursing from the University of Indianapolis and a Master of Science in nursing from Indiana University-Purdue University in Indianapolis. Additionally, she achieved a Master of Business Administration from Nova Southeastern University in Davie, Florida.

She begins her new role September 29.

Attention broadcast outlets:  Zakrzewski pronunciation is Zuh-krew-ski

Nine-year-old Ellie Schwab of Glasford has been in the hospital three times in less than a month. In early October she endured an eighth surgery in her short lifetime because she was born with spina bifida, a condition which leaves the spinal cord partially exposed, leading to nerve damage and infections. Her mom Stacie says it’s been hard, but she’s inspired by her daughter’s spirit and the encouragement she finds at OSF HealthCare Children’s Hospital of Illinois.

“It’s amazing. OSF has truly been a blessing for us and for Ellie.”

On National STEAM Day this week, engineers from Jump Trading Simulation & Education Center visited patients and shared an activity in which they mixed liquids to chemically react and poured it into molds to make a small pediatric heart. It’s just one of many activities that engage kids in Science, Technology, Engineering, Art and Math while at OSF Children’s Hospital.

Sister M. Pieta Keller, an engineer who has been at Jump for more than five years, led the activity with Ellie.

“Right now, these two liquids are interacting and it’s gonna change color on us in a little bit of time. It’s actually producing heat,” she explains as she leads Ellie to feel the bottom of the mold. “Feel the bottom of the cup. Feel that? That feels warm.”

Ellie admits she’s not a big fan of science. What she connects to is an activity she is allowed to do every day starting at 9 a.m. – art.

“I like to paint. I like to draw, color; pretty much anything that involves art I like to do,” she shares.

Ellie has enjoyed making slime and decorating a turkey with a feather on which she drew with a message of appreciation for her child life specialist – one of several teachers who make sure the Illini Bluffs third grader is keeping up with lessons from her school.

“It’s amazing. It helps her learn and it keeps her mind off of all the medical things she needs to help her grow,” says Stacie Schwab.

OSF provides a wide range of ways to keep hospitalized kids learning, including providing an activity book that uses augmented reality programs and teachers such as Becky Dailey who interact regularly with children to provide ongoing enrichment and to coordinate lessons and homework with their local school.

Ellie’s mom Stacie says the education and activities help her daughter feel as though she’s not missing out.

“As she’s grown older and had to be in the hospital, they always have someone come in and make sure she has some kind of activity she could do and there’s a huge playroom down the hall that she absolutely loves.”

Sister Pieta says engaging kids in activities that cover Science, Technology, Engineering, Art and Math hopefully sparks an interest in one of the areas related to medicine.

“We want them to be able to find out where they can best serve the Lord and the world and where they’re called to and whether that’s in health care – whether as a doctor or nurse or as a lab tech or over with us in Innovation, whatever that may be, whether that’s clinical or non-clinical, a lot of times they find their place I health care.”

OSF Innovation also marked National STEAM Day by launching the first of 12 Anatomy Academy augmented reality lessons that are available for free for anyone on the OSF STEAM website.

Stacie Schwab, mom of nine-year-old Ellie

Sister M. Pieta and Ellie Schwab

B-roll of STEAM activity at OSF Children's Hospital of Illinois