Beyond Extreme Prematurity: Mikayla’s Story

Mikayla’s journey is one of defying the odds, and in more ways than one. Like many micro-preemies, she faced serious challenges with her lungs, airway and digestion from the very beginning.

For her first few months, she received care in another hospital’s Level 3 neonatal intensive care unit (NICU). But when her condition suddenly worsened, she needed even more advanced support. A special critical care transport team rushed her to Connecticut Children’s Level 4 NICU at Hartford Hospital, where neonatal specialists — plus lots of other pediatric experts — were ready and waiting.

“Before we even arrived, the doctors at Connecticut Children’s already knew everything about Mikayla,” Anna recalls. “She was that complex.”

Their preparation was crucial, because every moment counted. The team discovered that Mikayla had pulmonary hypertension, a life-threatening condition that made it even harder for her tiny lungs to get oxygen to her body. Despite being on three different ventilators, she was still struggling to breathe.

“That night, we thought we were going to lose her,” says Anna. “But she pulled through. She always pulls through.”
 

To help Mikayla breathe, the team recommended surgery to place a tracheostomy tube — or “trach” — in her airway. The small device created a direct path for air to reach her lungs, which decreased the work of breathing and allowed Mikayla to be much less sedated, promoting more normal infant development.

After surgery, she was transferred to the Pediatric Intensive Care Unit (PICU), where her care team monitored her closely. By her side was a multidisciplinary team of specialists — including otolaryngology (aka ear, nose and throat, or ENT), pulmonary medicine, gastroenterology and critical care — working together around the clock.

Mikayla’s parents were part of this team too. Anna and David knew their daughter had a long road ahead, and that her health depended on their readiness. As Mikayla grew stronger, they learned everything they could about how to take care of her — from trach care to sick-day planning. Her nurses were their personal coaches.

“Mikayla was so sick, and we were exhausted. But I told the nurses, ‘Train us,’” Anna says. “They taught us. They encouraged us.”

Soon, Mikayla was ready for a major step forward: She was able to come off the ventilator for a few hours, breathing on her own for the first time.

“That was the turning point that shook the whole floor,” Anna remembers. “None of us expected it would happen that soon.”
 

After eight long months in the hospital, Mikayla was finally ready for home — and home was ready for her. It took a lot of preparation: the right education for her parents, the right medical equipment on hand, and the right home nursing care lined up (during a global nursing workforce crisis, no less).

During this transition to home and outpatient care, ENT specialist Nicole Murray, MD, happily became Mikayla’s doctor. Dr. Murray directs Connecticut Children’s Division of Aerodigestive Medicine, a program dedicated to patients with complex disorders of the airway, lungs and gastrointestinal systems. As she helped Mikayla’s parents prepare to bring their daughter home, she remembers marveling at how they rose to every challenge. Clearly, determination runs in the family.

“Transition from our hospital to home is always our goal, but for babies with a trach and a ventilator, this is no small accomplishment,” says Dr. Murray. “I saw Mikayla’s mother be more active than I have ever seen a parent be. Anna is magnetic and energetic, and she doesn’t accept a barrier.”

At home, Mikayla began to thrive. A pediatric physical therapist from Connecticut Children’s visited, teaching Anna and David how to encourage their daughter to move. Mikayla began to hit milestone after milestone.

“She started sitting up, crawling, pulling to stand,” Anna says. “That’s when we really saw her take off.”

By 2 and a half years old, Mikayla was breathing well day and night without any help from the ventilator. So well, in fact, that she achieved a really big and unique milestone: Dr. Murray removed the trach tube.

Today, a tiny scar on Mikayla’s throat is the only evidence of her dramatic health journey. She’s been discharged from nearly every specialty clinic at Connecticut Children’s, and sees her beloved pulmonologist, Haviva Veler, MD, just twice a year. (“Dr. Veler listens to Mikayla's lungs, and then Mikayla listens to Dr. Veler's lungs,” says Anna.)

Incredibly, despite how early she was born, Mikayla avoided many of the complications that commonly affect micro-preemies. Except for a gastrostomy tube (G-tube) for nutrition, she never needed surgery on her stomach, or her eyes. She was never readmitted to the ICU after discharge.

And now, at age 3 and a half, she’s focused on adventures far beyond the hospital — and for her family, far beyond imagination.

“She’s just like a normal kid! A very cheeky, sassy little kid,” says Anna. “The things that she does, the energy she has, the love she throws around — she’s just amazing. At this point, she’s already conquered so many tough things. She knows her own capabilities. She knows what she wants, and she goes for it.”

So does Anna. Inspired by Mikayla’s strength — and by the nurses who never gave up on her — Anna is now in nursing school.

“The nurses at Connecticut Children’s gave me the motivation to go back to school,” Anna says. “They made sure we didn’t give up hope. What they gave us — all that compassion, that support — I want to give to someone else. I want to help other kids thrive like my daughter has.”

She’s already started. At the request of care teams, Anna now speaks with other parents facing long, uncertain hospital stays. She shares Mikayla’s story, invites families to her home, and offers something she once needed herself: hope.

“I want them to know they’re not alone,” Anna says. “If I can help one more family believe their child can thrive — that’s what matters.”