Just one look at Natalie and you would never know she is living with cystic fibrosis. At 16 months old, she is flourishing! Like many parents, Cortney and Andrew Campbell had no idea they were carriers of cystic fibrosis. They had no family history and Cortney’s pregnancies with Natalie and big sister, Ava, were completely normal. Cystic fibrosis is an inherited disease that causes the body to make thick, sticky mucus, causing issues in the lungs and digestive system. The thick, sticky mucus can clog the lungs and creates a place for bacteria to easily grow and cause infections.
When they got the call from Natalie’s pediatrician that her newborn screening came back positive for markers of cystic fibrosis, Cortney tried to hang onto every ounce of hope that Natalie was just a carrier and would not be diagnosed with the disease. Natalie would need to have a sweat chloride test performed before they could make an official diagnosis. A sweat chloride test is painless and is considered the gold standard for diagnosing cystic fibrosis. The sweat test measures the amount of chloride in the sweat. People with cystic fibrosis have more chloride in their sweat than those without. Natalie’s test came back with high levels of chloride in her sweat, and she was officially diagnosed with cystic fibrosis.
As a health care professional, Cortney’s knowledge and experience was almost detrimental when she learned of Natalie’s diagnosis. “Knowing too much is sometimes really disheartening,” said Cortney. Andrew has been Cortney’s support through the whole journey of Natalie’s diagnosis. He spends time researching cystic fibrosis and understanding Natalie’s specific needs. “It’s almost like Andrew is one of the physicians on Natalie’s care team when we are at her appointments,” said Cortney. “He is engaged in her care plan and provides educated input.”
Since the day of Natalie’s diagnosis, Cortney asked Andrew to tell her one good thing about cystic fibrosis every week. Whether it be new treatment options, stories of hope from other people living with cystic fibrosis or promising clinical trials, the good news keeps Cortney going!
Living with cystic fibrosis
When Natalie was just a few weeks old, she was having trouble breathing. Her ribs started to sink in when she took a deep breath, and her nose was flaring. Cortney called Dayton Children’s to speak with the pulmonary provider on-call. She was directed to bring Natalie into the emergency department where she was put on high flow oxygen and admitted to the pediatric intensive care unit (PICU). Luckily, her stay in the hospital was short-lived. She was diagnosed with a form of RSV, which was unrelated to her cystic fibrosis.
Although a hospital stay when your baby is just a few weeks old is not ideal, Natalie and her family had the best experience while staying in the PICU. Her nurses seemed to genuinely enjoy caring for Natalie and her pediatric pulmonologist Mark Minor, MD was always straight forward and caring when he came to visit. Cortney also had a patient advocate by her side when the providers were rounding on Natalie. Since Andrew couldn’t always be there due to work, it was reassuring to know there was another set of ears listening to the providers and advocating for Natalie.
Living with a chronic illness during COVID
Not long after Natalie’s hospital stay, Cortney’s maternity leave ended, and she returned to work. Around the same time COVID-19 made its way into Ohio and stay-at-home orders were put into place. As a nurse in an adult hospital, Cortney was concerned about bringing the virus home. With guidance from Dr. Minor, Cortney took a leave of absence to protect Natalie from contracting COVID-19. For several months, they kept an open line of communication with Dr. Minor. He shared statistics on babies with cystic fibrosis who had contracted COVID-19, locally and nationally. Although well informed, their attempts to keep COVID-19 out of their household were unsuccessful. Both Cortney and Andrew were diagnosed in November 2020. Trying their best to care for their two young children and quarantine from them was not an easy task. As far as they knew, Natalie and her older sister Ava were unaffected by the virus and remained healthy.
Two weeks later, Natalie had a follow-up appointment with Dr. Minor. He decided to test her for COVID-19 antibodies. The results were positive. It’s unknown if Natalie had COVID-19 or just developed antibodies from being around her parents, but the good news is that her body responded in the best way possible to the virus. Her cystic fibrosis symptoms did not flare up and instead, her body equipped itself with antibodies to fight off the virus if she is ever exposed again. As parents of a child who is more susceptible to respiratory illnesses, knowing that Natalie had been exposed to COVID-19 and didn’t get sick was a huge relief. Natalie and her family still do their best to stay away from crowds because it’s much harder for Natalie to heal if she does get sick.
As long as Natalie stays healthy, she visits Dr. Minor for follow-up appointments every six months. To be proactive and make sure Natalie doesn’t require more frequent trips to Dayton Children’s, she follows a daily medication and physiotherapy regimen. Cortney keeps a stethoscope at home to check Natalie’s breathing and they weigh her frequently to make sure she is gaining weight appropriately.
Courtney and Andrew are very optimistic for the future of cystic fibrosis. Natalie is on the registry to participate in any clinical trial that comes out and is compatible with her gene types and age. While there is currently no cure for cystic fibrosis, there are so many clinical trials and treatments on the horizon. The sooner patients can participate in these treatments, the less damage their lungs will experience. “My hope is that Natalie is able to grow and live her life to the max, without health restraints,” said Cortney. “I also hope others have as much faith in science and medicine that I do and know that one day very soon we will have a cure for cystic fibrosis.”