Noah survived a very early surprise delivery but developed bronchopulmonary dysplasia, a type of chronic lung disease that can occur in premature babies. His local NICU suggested his family bring him to a place that could provide the highly specialized care he needed — which led them to CHOP’s Newborn and Infant Chronic Lung Disease Program.
Lara was at her cattle farm in Virginia when her water broke. She was just 22 weeks pregnant. Her husband Denton’s car was in the shop, so they had to take the farm pickup truck to get to the hospital. As soon as John pulled the truck onto their bumpy rural driveway, Lara’s contractions became incredibly painful and were already about a minute apart.
Lara knew that if the baby was coming this early, they needed to get to a hospital with a NICU. The closest one was an hour and a half away, so that’s where they headed. It was the longest ride of their lives. Less than two hours after arriving at the hospital, Noah was born.
Oxygen support needed to survive
Noah weighed about a pound. Both of his eyes were still fused shut. The doctors in the NICU didn’t think he’d live more than a few hours.
Noah’s lungs weren’t developed enough to help him breathe outside the womb, so he needed high levels of breathing support. It was a catch-22, though, as his premature lungs were too fragile to handle the levels of positive pressure and oxygen support he needed to survive. Extremely premature infants are at risk for developing bronchopulmonary dysplasia (BPD), when their lungs are exposed to the environment outside of the womb as they are still developing. Often, BPD develops after infants have needed to be on a breathing machine for a prolonged period of time. It represents a form of lung injury, and in Noah’s case, it also lead to the development of numerous cysts in his left lung, which were pushing on his heart.
Fighting to survive
Noah spent more than four months in the NICU in Virginia. It was a roller coaster ride. Roughly, every two weeks, the doctors would tell Lara and Denton to say goodbye to Noah because they didn’t think he would make it through the night.
“He almost died so many times and he kept pushing through,” says Lara. “He is so strong. From day 1 in his incubator he was doing pushups. All of the nurses were amazed by his strength.”
Noah was up against a lot, but one thing was clear: He had the strength and will to survive. He just needed the right team to help him with his lungs. The NICU team at Noah’s birth hospital suggested the family have him transferred to a hospital that could provide the specialized care he needed for his lungs.
Specialized care for bronchopulmonary dysplasia
Lara and Denton traveled to a handful of hospitals on the east coast. In most cases, they were told their son would require surgery to have a tracheostomy tube and would likely be in the hospital for another year. Lara wept at the thought of it.
Then the couple found Children’s Hospital of Philadelphia (CHOP), which has a specialized Newborn and Infant Chronic Lung Disease Program (NeoCLD), which treats babies with the most severe forms of lung disease, including BPD. Very few programs in the world offer the level of specialized care the NeoCLD Program provides. Lara and Denton visited the hospital, met with program leaders, and toured the Harriet and Ronald Lassin Newborn/Infant Intensive Care Unit (N/IICU).
“They were wonderful,” says Lara. “They actually listened to what I had to say about Noah and his condition and asked a lot of important questions. They estimated his stay would be four months. They were very calm and knowledgeable about everything. I looked at my husband and said, ‘This is the place.’ He agreed.”
Personalized care from an interdisciplinary team
Noah was transported to CHOP via helicopter. With BPD, no two patients are alike. Effective treatment requires an individualized approach. An evaluation determined Noah needed an emergency lobectomy, a surgery to remove the lobe of his left lung that had numerous cysts.
During Noah’s stay in the N/IICU, the NeoCLD’s interdisciplinary team cared for him. After recovering from the lobectomy, he was able to breathe on his own without the breathing machine (ventilator). He continued to feed using a nasogastric tube (NG-tube), a tube that carried the breast milk Lara pumped through his nose to his stomach. He was also treated for reflux and pulmonary hypertension.
“The N/IICU doctors saved my child’s life,” says Lara. “They really studied him and the particular care he needed versus the majority of babies. They did what they needed to do to keep him alive.”
After 97 days in the N/IICU, Noah was finally able to go home.
Getting better every day
When Noah was discharged, he still required oxygen support and the NG tube. Now 1, he no longer has either and eats food by mouth. He takes medications to help with breathing and sees a lung specialist in Virginia. His doctors expect that his left lung will continue to grow enough to compensate for the lost lobe.
It’s been quite a journey for the family, and they have a long way yet to go. But they are inspired by the progress Noah makes every day.
“He is doing great,” says Lara. “I think about all of the things that the doctors said were going to be wrong with him. It’s just very humbling to see him grow and be who he is and defy every odd. I thank God for him every day. I couldn’t imagine my life without him.”