Born with chronic lung disease, Tuli spent 225 days in the NICU. With the right care and support, her award-winning pulmonology team helped her get home and start breathing on her own.

News, Child Health | 3 months ago

Helping Tuli Breathe Easy at Home

Born with chronic lung disease, Tuli spent 225 days in the NICU. With the right care and support, her award-winning pulmonology team helped her get home and start breathing on her own.

Aside from the unrelenting pregnancy sickness, Talisa Young-Tisdale’s first pregnancy was relatively uneventful. She didn’t know she had what she calls “stroke level” blood pressure until she was diagnosed with preeclampsia at a routine prenatal visit.

Although delivery is often the best treatment for preeclampsia, this wasn’t a viable option for Talisa, who was only 22 weeks pregnant. Her baby girl needed more time to grow and develop – her survival depended on it.

Talisa was immediately admitted to Atrium Health’s Carolinas Medical Center, where her care team worked to keep her baby and blood pressure as stable as possible, for as long as possible. “I was basically trying to wait it out for as long as I could,” Talisa recalls.

Talisa always knew she’d deliver at Atrium Health’s Carolinas Medical Center – it’s where her Atrium Health Women’s Care OB/GYN delivers, after all. She just didn’t expect it to be this early, while she was still in her second trimester. Fortunately, it was the best place for both Talisa and her newborn. In addition to offering the full spectrum of care, Carolinas Medical Center is connected to Atrium Health’s Levine Children’s Hospital and the region’s most advanced NICU.

It was exactly where baby Tuli needed to be when she was born by emergency C-section at 26 weeks gestation.

Though she’d gained four lifesaving weeks in her mother’s womb, Tuli was still born prematurely, with underdeveloped lungs. “She had a combination of severe bronchopulmonary dysplasia and pulmonary hypertension,” says Ashley Chadha, MD, Tuli’s pulmonologist at Atrium Health Levine Children’s. The conditions together resulted in damaged lungs and constricted airways, making it impossible for Tuli to breathe on her own.

Tuli’s pulmonologists tried a variety of treatments, like intubation, steroids and oxygen, and just as she’d seem to be getting better, her health would decline or her oxygen would dip. As days turned to weeks and weeks turned to months, it became clear that Tuli needed a different approach. That’s because her condition was so severe, it would require more than therapies and expertise to heal – it would require time.

Though Tuli had a long road ahead of her, her family and care team turned their focus to a new strategy: helping Tuli heal at home.

The turning point

Sending a baby home in Tuli’s condition isn’t easy. It demands advanced treatment, a leading-edge team of specialists and a failproof plan of care. Fortunately, Levine Children’s Hospital had all three. It’s even home to one of the nation’s best pediatric pulmonology programs and is the Charlotte region’s only children’s hospital recognized by U.S. News & World Report.

Dr. Chadha and the pulmonology team determined mechanical ventilation via a tracheostomy tube would be the safest way to get Tuli home. “The severity of Tuli’s illness warranted long-term ventilation to allow her to outgrow her premature lung disease,” he explains.

In the procedure, an opening was made in Tuli’s windpipe, where the tracheostomy tube – or trach – was inserted. Then, a machine called a mechanical ventilator was connected to the tube to keep Tuli’s breathing under control.  

Although Tuli’s parents had been anxious about the procedure – and the equipment that came with it – they quickly said it was “the best thing we did.” Before the trach, their daughter’s energy levels had been low. Within a week, she was playful, laughing and showing off the bubbly personality her parents had long waited to see.

“That was the turning point,” says Talisa. And it was also the solution that got Tuli home for the very first time.

Learning to breathe

On April 27, 2021 – 225 days after her birth – Tuli went home. Though the Young-Tisdales had the house prepared for a newborn, they never imagined they’d bring home machinery and medical equipment, too. “You prepare your baby’s nursery and have no idea this will happen to you. But after a few months, it started to feel more normal,” says Talisa.

For families like Tuli’s, Atrium Health Levine Children’s offers special pulmonology programs to help with the transition home. This includes a tracheostomy navigator program, which consists of a full-service team of respiratory therapists and nurses who support families and walk them through how to use the machines. “Everyone really cares about Tuli,” says Talisa. “They’re really invested in our journey, and we never feel alone.”

Since coming home, Tuli has only continued to thrive. She’s crawling, standing and even taking steps – a triumph for an 18-month-old who was once told she might not walk until 2 or 3. And that’s not even her biggest achievement. Today, Tuli is off the oxygen and ventilator, and she’s learning to breathe through her nose and mouth.

“She’s had a tough go of it in the first phase of her life,” says Templeton, Tuli’s dad. “But one thing she’s shown us is that doesn’t stop you from living.”

As Tuli’s lungs keep getting stronger, the next step will be to remove the trach. But Talisa and Templeton are in no rush. They know Tuli will do it all in her own time – and crush everything that comes her way.