Leap of Faith - PCD Foundation Helps Family Find Answers at Lurie Children’s

August 27, 2019

“The minute Faith was placed in our hands, I knew she was pretty sick,” Linda Wood says. Still, that did not deter her family from adopting Faith from an orphanage in China in April 2011.

Back in 2009, Faith was found as a three-month-old baby in an abandoned hospital. Medical testing confirmed she had situs inversus totalis, a complete transposition of the abdominal organs that caused her heart to be on the right. Because of this diagnosis, Faith was placed in a medical foster home in Beijing.

Once Linda and her family brought Faith home with them to the Chicago area in the spring of 2011, they began a series of appointments with a variety of doctors. After doing some research of her own, Linda reached out to the PCD Foundation. She believed her daughter could have primary ciliary dyskinesia (PCD), a rare genetic condition in which cilia throughout the body do not move as they should, causing a build-up of mucus. PCD can cause chronic infections of the ears, sinuses and lungs, and it can be associated with an abnormally placed heart and/or internal organs.

The PCD Foundation encouraged her to visit Lurie Children’s, where Faith could see a pediatric lung doctor and be evaluated for PCD.

In December 2011, when Linda and Faith met with the pulmonary staff at Lurie Children’s, “that’s when life began for my daughter,” she says. Although the team could not make an official diagnosis given the tools to diagnose PCD were limited back then, they began years of bronchoscopies and biopsies of her cilia to try and determine if Faith had PCD. Her symptoms were consistent with PCD, and eventually a specialized nasal nitric oxide test confirmed she did indeed have PCD.

Faith began treatments similar to the treatment that patients with cystic fibrosis receive. Twice a day, she wears a vest that causes mucus to move through her lungs since her body’s cilia cannot create movement on its own. “That was one of the greatest gifts because it changed everything for Faith’s therapy,” Linda said. Vest treatments, in combination with a two-week inpatient stay that required a tune-up of Faith’s lungs, have kept her hospital-free for the past four years.

Fast forward to 2019, when Lurie Children’s Hospital and its Division of Pediatric Pulmonary and Sleep Medicine is now home to the first PCD Foundation accredited PCD Center of Excellence in Illinois. An entire team of multidisciplinary specialists including a physician, nurse, genetic counselor and respiratory therapist are committed to providing the most up-to-date diagnostic and treatment plans for children with PCD. Lurie Children’s has the specialized instrument and training to perform nasal nitric oxide measurements in children and the expertise to care for these children with complex needs. With consistent follow-up care in the PCD clinic, Faith is a healthy, active 10-year-old child with the goal of becoming a “ninja.” 

“The minute I walked into Lurie Children’s as a mom I felt tremendous relief, even if my child was very, very sick,” Linda says. “I feel like Faith is in the very best hands, and even when your child is sick, that’s the most wonderful feeling in the world. I know I’m getting the most accurate information and we’re going to work together.”

 

Learn more about Lurie Children's Pediatric Primary Ciliary Dyskinesia (PCD) Center of Excellence.