What Happens When a Child is Born with a Life-Threatening Chronic Disease?

Since her birth 18 years ago Jessica Ramirez has battled every day just to breathe normally. Jessica has cystic fibrosis, a life-threatening genetic disease that affects the lungs and digestive systems of about 30,000 children and adults.

Since undergoing emergency life-saving surgery shortly after she was born, Jessica has spent so much time in and out of Helen DeVos Children’s Hospital that she and her parents consider the hospital staff part of their extended family.

The vision

Care for patients with cystic fibrosis, CF, has improved dramatically during the past 50 years, thanks to research that has developed new medications and treatments. Previously children with CF rarely lived long enough to attend elementary school. Now the median age of a person with CF is 37 years. The Cystic Fibrosis Care Center, at Helen DeVos Children’s Hospital, part of the division of pulmonary medicine, cares for 250 children and adults with CF.

The program

A multidisciplinary team of physicians, nurses, medical social workers, a dietitian, respiratory therapists, genetic counselors and child life staff work together in the Cystic Fibrosis Care Center. Helen DeVos Children’s Hospital is a member of the CF Therapeutic Development Network of 77 care centers nationally collaborating in clinical trials that evaluate new therapeutic treatments. Nine other cystic fibrosis research studies are underway at Helen DeVos Children's Hospital supported by clinical research staff.

The Results

In honor of Jessica’s graduation from high school, her mom wrote a letter of thanks to her caregivers at Helen DeVos Children’s Hospital. It said in part: “There have been so many people involved in Jessica’s life that took the time and care to help us, explain to us and guide us through it all. They have helped this baby from birth to young adult. They have helped her become a strong, knowledgeable and confident young woman able to manage her cystic fibrosis into adulthood. Thank you for helping us raise Jessica.”