When he was born at 30 weeks, following a complicated pregnancy, Connor almost proved them right.
"But over and over again, Connor defied the odds and pulled through," Deb recalls. "And The Children's Hospital of Philadelphia played a huge role in helping him do it."
Connor weighed only 3 pounds, 5 ounces at birth, and his lungs were extremely premature; he required a mechanical ventilator to breathe.
For eight weeks, he struggled in the neonatal intensive care unit (NICU) of a hospital near his parent's home. He gained weight slowly. After he was weaned from the ventilator, his breathing was raspy, and the oxygen levels in his blood would dip dangerously low.
Transfer to CHOP
Deb and her husband, Scott, realized their son wasn't making progress, and they arranged to transfer him to Children's Hospital.
"That was an incredibly fortunate decision," says Deb. "Almost as soon as he got to Children's Hospital, Connor crashed. He had to go back on the ventilator, had seizures for a full hour and, eventually, had to be resuscitated. The doctors gave him an emergency tracheostomy — an artificial airway in the neck — right at the bedside."
Children's Hospital doctors, working with the Technology Dependence Center (TDC) team, diagnosed Connor with multiple medical problems, including an airway that was prone to collapse, underdeveloped lungs, a seizure disorder, severe gastric reflux, bilateral brain hemorrhage and developmental delays.
While Connor was in the Harriet and Ronald Lassin Newborn/Infant Intensive Care Unit (N/IICU), the Millards were able to remain close by at the Ronald McDonald House, a "home away from home" for families and expectant mothers receiving care at the Hospital.
"We have made lifelong friends at Children's Hospital and with the other families at Ronald McDonald house," says Deb.
During this time, Deb and Scott worked with a team of nurses to master the wide range of clinical skills they would need to care for their son at home. These complex tasks included caring for his tracheostomy, suctioning his airway to clear secretions, and learning the mechanics of the ventilator that enabled Connor to breathe.
At 5 months, Connor made a triumphant trip home. His parents were both thrilled to have him with them and awed by the responsibility of caring for him. Although he has suffered a few setbacks since then, Connor continues to astound everyone he meets with his charm, his outgoing personality and his ability to take life in stride.
"Connor is a big flirt," admits Deb. "He'll take your hand and lead you to where he wants to go. He adores his friends and loves caring for his tracheostomy doll. He changes his baby, feeds it with a cup and even does suctioning and trach care."
Right now, Connor is enchanted with dogs. "He loves to wear shirts with dogs on them and he enjoys howling like a dog too," says Deb. "The fact that he depends on a ventilator to breathe doesn't bother him at all. It's just another part of him."
Embracing life, with help from Technology Dependence Center
The Technology Dependence Center/Home Ventilation Program at Children's Hospital continues to follow Connor and provide the family with support. The program, directed by Howard Panitch, MD, helps the family use assistive therapies — such as oxygen and mechanical ventilation — to help Connor grow and develop and decrease his need for hospital stays.
With his ventilator and the creativity of the TDC team — who adapts his breathing support to various situations — Connor is able to lead a mostly normal childhood. He participates in gymnastics, music class, Sunday school, family beach trips and a daily preschool program.
It's seeing Connor — and other children like him — live active lives despite multiple medical problems that motivates the TDC team.
"Working with Connor's family and the other families in the TDC is such a rewarding experience," says Susan Kolb, MSN, CRNP, a nurse practitioner at the Center. "Their focus, motivation and tireless commitment to Connor's health is inspiring and impressive."
Originally posted: July 2009