baby Colt heads home after a successful tracheostomy

Child Health, Family Health | 5 years ago

Champions for Lung Disease: Navigating Life After the NICU

For infants with lung disease and their families, navigating life after the NICU can be both frustrating and challenging. Through Champions for Lung Disease, these families now have the extra support and care they need to help them transition home.

One hundred forty-two. That’s the number of days Colt Duckworth spent in the neonatal intensive care unit (NICU) at Levine Children’s Hospital.

Soon after he was born, Colt was diagnosed with tracheomalacia, a condition that causes the windpipe to collapse. And at just 8 weeks old, Colt underwent a tracheostomy, a surgery that put a permanent airway in his windpipe to help him breathe. 

Colt recovered well from his surgery. And after 142 days, he was finally able to go home.  

But while one fight was beginning, a new one was just beginning. “We know that patients like Colt, who are transitioning out of the NICU, face a lot of challenges – both medically, but also socially and developmentally,” says Ashley Chadha, MD, a pediatric pulmonologist at Levine Children’s.

For patients with premature lung disease and their families, navigating life after the NICU can be frustrating and confusing. There’s no magic pill your baby can take – no pamphlet that can prepare you. 

The only real cure for premature lung disease, says Dr. Chadha, is a coordinated care team that walks the road with you. Fortunately, a new program called Champions for Lung Disease does just that – and Colt and his family were perfect candidates.

Walking the road with you

Spearheaded by Dr. Chadha himself, our lung disease program helps infants with all types of lung disease transition home from the hospital. “We don’t stop advocating for your child after NICU discharge – we’re going to walk that road with you,” says Dr. Chadha. 

Starting about two weeks before an infant is discharged – and for two years after – this program helps families navigate the long-term complexities of home care and makes sure these patients get the highest, closest level of care possible. 

“All these families are going to be followed more closely than ever for all their healthcare needs,” says David Fisher, MD, the medical director of neonatology at Levine Children’s. “We can expect that fewer of them will need to come back to the hospital – and as a result, these children and their families will have better, more normal lives.”

One of the most meaningful ways Champions for Lung Disease aims to more closely support these families is by equipping them with two nurse navigators who care for their baby – and their baby, only. 

For Colt, these individuals are Jenny Tysinger, RN, and Becky Siuta, RN; they help with everything from scheduling follow-up appointments to working the monitors to helping with feedings. Whether it’s a routine check-up or a medical emergency, these dedicated nurses are there to explain Colt’s history and to advocate for whatever care his family needs. 

“These families are rock stars. They go above and beyond each day to care for their child,” says Dr. Chadha, whose own son spent five days in the NICU. “And now we’ve got two people dedicated only to their child, and we’ve set aside resources to help them with their struggles. It’s a real victory for these families and a real way to show them the compassion of LCH.”

Every step of the way

Today, Colt is breathing better and is a much happier baby boy, but he still needs extra care. For Emily and Cameron, things like suctioning, feeding tubes and trach tubes have become the new normal. 

Although there are still challenges to overcome, the Duckworths have peace of mind – because they aren’t facing them alone. Through Champions for Lung Disease, they now have care, support and two dedicated nurses who will be there every step of the way. 

the duckworths stand with baby Colt and two nurses

The Duckworths with their two nurse navigators, Jenny Tysinger, RN, and Becky Siuta, RN.

At Atrium Health, all the best care for kids now has one trusted name. Learn more about Atrium Health Levine Children’s.