Chronic Lung Disease and Necrotizing Enterocolitis: Dylan’s Story
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When Harvey Vazquez spoke with Huayan Zhang, MD, Director of the Newborn and Infant Chronic Lung Disease Program at Children’s Hospital of Philadelphia (CHOP), in March 2017, there was desperation in his voice. Six weeks before the call, Harvey’s wife, Jessie, had nearly died giving birth to their twin boys prematurely at 27 weeks. One of them, Dylan, was still in rough shape in the NICU at his birth hospital. His lungs were underdeveloped and he had been diagnosed with infant chronic lung disease (CLD). Dylan also had necrotizing enterocolitis (NEC), an intestinal disease that was making it hard for him to eat and get the strength he needed to get better.
After the call with Dr. Zhang, Harvey was confident CHOP’s program could help. Dylan was transferred to CHOP’s Harriet and Ronald Lassin Newborn/Infant Intensive Care Unit (N/IICU) and remained there for the better part of a year as he fought for his life.
Infant chronic lung disease, also known as bronchopulmonary dysplasia (BPD), is a complication of premature birth. Despite advances in neonatal care, chronic lung disease remains a major source of morbidity and mortality for extremely low birth weight infants. To achieve the best outcome for these infants, care provided by a multidisciplinary team of neonatologists and pulmonologists with experience and specialized training is needed.
With the Newborn and Infant Chronic Lung Disease (NeoCLD) Program, the CHOP N/IICU is one of the few places in the world able to provide the specialized care infants with the condition require. The program was recently designated a Frontier Program by Children’s Hospital of Philadelphia for its potential to change the outlook for children with severe CLD. Another reason for the Frontier designation is the comprehensive care babies with CLD receive in the N/IICU, which has the resources to care for babies as they grow and have other health needs.
When Dylan arrived at CHOP, his CLD was severe. It took time for Dr. Zhang’s team to stabilize him.
“He went from oxygen to a respirator to an oscillator,” explains Harvey.
A few months into Dylan’s stay in the N/IICU, it was clear he would need long-term support from a ventilator. After consultation from Dr. Zhang and her team, Jessie and Harvey decided to have him undergo a tracheostomy, a procedure that created an airway in his neck for the ventilator tube. It was a difficult decision, but with the trach, they were finally able to pick up and hold their son.
Necrotizing enterocolitis (NEC) is a serious illness that develops when a section of an infant’s intestinal tract becomes inflamed and damaged, which can lead to the death and removal of parts of the intestine. The inflammation can lead to blockages in the intestinal tract, which Dylan experienced.
Although Dylan could gradually tolerate more breast milk in his intestines, he was unable to safely take feeds by mouth. The care team therefore decided to place a gastrostomy tube (G-tube) in Dylan’s stomach so he could receive breast milk directly into his stomach without the need of a feeding tube through his mouth or nose. Over time, Dylan not only recovered from NEC, but he also avoided surgery and grew.
During Dylan’s stay in the N/IICU, his nurses encouraged Jessie to bring his twin brother, Noah, to the hospital during visits. Jessie would place Noah in the hospital bed alongside Dylan so the twins could bond.
After eight months in the N/IICU, Dylan was transferred to CHOP’s Progressive Care Unit (PCU). Jessie and Harvey were trained on how to care for Dylan’s trach and G-tube.
“The training wasn’t scary or overwhelming,” says Jessie. “I felt like I already knew what to do because I watched the nurses take care of him. But it was intense training because they wanted to make sure we were well prepared for him coming home.”
Dylan was discharged before his first birthday in January 2018. While his first few months at home were not easy, his condition gradually improved. Jessie and Harvey went through additional training at CHOP a year later when they began to wean Dylan off his respirator. When his trach was removed in May 2019, Dylan blossomed.
“Once he got decannulated, he immediately began to speak,” says Jessie. “It was a big shock to everyone, including the nurses and doctors. It was nonstop talking.”
Today, Dylan is an upbeat, independent 3-year-old boy who loves to run and play with his protective and caring twin brother. He recently started school and is learning about numbers, colors and shapes.
Feeding has been his biggest long-term struggle. He is still mainly fed through the G-tube, and is slowly becoming more comfortable with chewing and swallowing solid food. Nevertheless, his parents are grateful for the care and support they’ve received along this journey, not only from their doctors and nurses, but also the N/IICU’s Psychosocial Services team, which includes psychologists and social workers.
“They listened to us as parents,” says Jessie. “It was a team, between the nurses, the doctors, the counselors and us. It was an amazing experience.”