A Tiny and Mighty Miracle: Celebrating a NICU Graduate's Journey

September 20 marked a special occasion for Kasan Kelley. It was his first birthday, and he was celebrated by loved ones after an eventful first year of life. This milestone is significant to all families but especially to Kasan's parents, Gemhyl and Onyinye.

One year ago, baby Kasan was welcomed into the world weighing only one pound. In his first year of life, he has overcome more than most. Kasan spent the first four months of a nine-month NICU journey in the Trinity Health Grand Rapids Neonatal Intensive Care Unit (NICU) and was cared for by the entire team. His medical team and parents believe it is a miracle that he has survived and thrived.

Welcoming Kasan
Onyinye's pregnancy was normal until she reached the fifth month. At that appointment, she learned that her amniotic fluid (fluid surrounding a baby in the womb) was low. The umbilical cord wasn't providing the nutrients her baby needed to survive.

The diagnosis was severe placental malfunction or insufficiency, and it was significantly impacting the baby's health and development. Doctors told Onyinye and Gemhyl their baby was unlikely to survive.

The couple returned weekly to Thomas Balaskas, MD, a high-risk pregnancy specialist, to monitor both mother and baby's health. They also began to meet with the NICU team to prepare for the unexpected.

For seven weeks, their baby bravely fought as his health steadily declined in the womb. Severely growth-restricted and measuring nearly seven weeks behind, he also showed signs of absent end-diastolic flow in the umbilical cord. Doctors feared he wouldn’t survive much longer.

At seven months, around 30 weeks into the pregnancy, a growth scan revealed a remarkable turnaround. Their baby had gained a few ounces and was just under a pound. The amniotic fluid level had increased to a normal range. Blood flow in the umbilical cord had improved, with no signs of absent-end diastolic flow, and they even saw the baby’s diaphragm moving — he was practicing breathing.

Seizing this sudden window for aggressive intervention, Onyinye and Gemhyl were admitted to Trinity Health Grand Rapids to prepare for delivery within 48 hours, following a round of steroid injections to strengthen the baby’s lungs. However, less than 24 hours after admission, their baby’s heart rate dropped significantly, and it was time for delivery.

Onyinye and Gemhyl went to the operating room not knowing what to expect. Doctors weren't sure if the smallest equipment would fit the newborn, and it was unclear if he would be able to breathe on his own.

However, defying all odds, Kasan Kelley was born. He soon let out a cry, indicating to his family and the NICU team he was ready to fight, at just 10 inches long and weighing a single pound.

Into the NICU
Steven Gelfand, MD, FAAP, regional medical director of Newborn Medicine and section chief of Neonatology at Trinity Health West Michigan, has cared for thousands of NICU babies. However, he's rarely cared for a baby as tiny as Kasan.

"Kasan was born with a weak heartbeat, and we weren’t certain if he'd be able to breathe on his own. He let out a cry, telling us his lungs were strong enough and that he didn't need a ventilator. He could breathe independently with a little help from a CPAP machine, similar to a machine commonly used for sleep apnea," Dr. Gelfand explained.

Nonetheless, Dr. Gelfand emphasized that baby Kasan would need an abundance of support. He had low blood sugar, a severely thickened heart, his lungs were underdeveloped, and he was in extreme protein and caloric depletion. Born at 30 weeks' gestation, Kasan was only the size of a baby at 23 weeks' gestation.

"I can't recall seeing a baby being so growth-restricted and surviving. Kasan is a miracle, and his success is a testament to our dedicated NICU team, but most importantly, to his parents," said Dr. Gelfand. "Gemhyl and Onyinye were incredibly attentive and ever-present. Throughout their NICU stay, they were willing to learn everything the nurses were doing, advocating for Kasan, asking questions, and reading to him."

The NICU Through a Parent's Eyes
 

When a newborn doesn't go home as planned, expectant parents can experience a rollercoaster of emotions, which Gemhyl and Onyinye did.

"Our experience was even more intense because we went from being told our son wouldn't survive in utero to suddenly becoming NICU parents. That emotional whiplash was overwhelming, going from fearing the worst to navigating this new reality where our baby needed critical care to survive," recalled Onyinye.

Feeling a mix of relief and fear, the Kelleys were grateful Kasan was in the NICU, but seeing him hooked up to machines and trusting others to care for him made them feel helpless.

“Besides the emotional strain, there was the constant running back and forth to the hospital, exhaustion from lack of sleep, and the weight of trying to balance everything at home. Every day was full of uncertainty, and it felt like we were in survival mode, just trying to get through one moment at a time while hoping for the best," Onyinye said.

Due to his decades of experience treating NICU babies and becoming close with their families, Dr. Gelfand recognizes the challenges many parents face, and he validates the shock that having a premature baby brings. NICU care is more than keeping babies alive — it includes reassuring the parents, being available for the entire family’s needs, and educating along the way.

Mothers and families typically choose their primary care provider or obstetrician, but they don't choose providers in the NICU. It’s one of the reasons building trust and establishing relationships are invaluable.

"It's impossible to describe how gut-wrenching it felt to walk away each night, even though we knew that Kasan was in the best possible hands with the NICU nurses and doctors," said Onyinye. "These professionals are highly skilled, compassionate, and dedicated to ensuring each baby’s well-being, yet we felt guilty because we were unable to stay with our child 24/7.”

Support from the NICU

For high-risk pregnancies, families typically meet the NICU team before birth. They receive a tour of the 15-bed unit, meet the providers (nurses, doctors, social workers, respiratory therapists, and more), and sit down to discuss expectations. Trinity Health Grand Rapids NICU takes a family-centered care approach, ensuring parents and loved ones are integral to a baby's healing.

"It's hard to find the right words to express our gratitude for the NICU staff. These incredible people do more than care for the tiniest, most fragile babies. They also provide immense comfort and support to parents, which takes an extraordinary kind of person," recalled Onyinye.

"The NICU staff at Trinity Health became like a second family to us, especially with our time there. They constantly encouraged us to take care of ourselves, reminding us that it was okay to rest and reassuring us that we could call at any time, day or night, for updates. Their understanding and support gave us so much peace of mind," she added.

NICU families often fear discharge, but the care team won't send little ones home without making sure families are educated and prepared.

"What once felt intimidating soon became routine, and we began looking forward to moments of caring for Kasan by bathing him, changing him, assisting with physical therapy, holding him, or even just participating in his milestones. We never imagined we'd be able to do these things in the NICU, but Kasan's care team made it possible," said Gemhyl.

Dr. Gelfand is proud of how personalized care plays a vital role in relationship building and trust.

"The culture of caring in the NICU is imperative to ensure babies get the care they need, as well as their families," he said. "Every NICU doctor, nurse, and therapist cares for these babies like our own."

An Ongoing Journey
Now at home with Kasan, Gemhyl and Onyinye have had time to reflect on their journey. Kasan currently has a tracheostomy to help his breathing. But he continues to get stronger and is expected to soon be taken off all medical support.

"Our NICU journey had incredible highs and really tough lows, but the staff's support, kindness, and professionalism helped us get through it all. We will forever be thankful for their care for our son and the compassion they showed us during such a challenging time," Onyinye reflected.

Gemhyl, who works at Trinity Health Grand Rapids as a workforce development and student development partner couldn't agree more. "God placed us here for a reason. From my employment to my son receiving life-saving care, there's no doubt that Trinity Health was where we needed to be."

Kasan is only one example of the outstanding neonatal care Trinity Health provides. Learn more about how Trinity Health Michigan’s NICU teams are prepared to give the tiniest patients the strongest possible start to life. See more of Kasan’s story on WZZM13.