Rachel was born on October 10, 1998. She was a seemingly healthy baby. She passed two strange stools but the doctors assumed that they were due to an immature digestive system. She was put on a special formula that would be more easily digested. For the first few months, Rachel seemed like any other baby. Sure, she spit up a lot and dirtied her diapers often but all babies do that. Right?

Eventually, Rachel got a cold. The cold progressed into an ear infection. Then a double ear infection. Soon, even though she was being treated with antibiotics, the cold became pneumonia. She couldn’t sleep laying down because it made her cough worse. She just seemed to be endlessly coughing and by then she was spitting up mucus as well as whole feedings. Rachel was awake and coughing most of the day and night. She was cranky and crying all the time from lack of sleep. Her cough was getting worse instead of better and she was loosing weight. She had been 16 lbs at six months old and at nine months she was only 13 lbs. To top it all off, she got horrible diarrhea from the antibiotics (or so we thought. It was probably the beginning of her pancreatic insufficiency). So, the feedings that she didn’t spit up were doing no good because her body didn’t have the chance to digest them.

Though her doctor suspected allergies and asthma, she scheduled a sweat test at the Children’s Hospital of Philadelphia (CHOP). We were supposed to be “just ruling it out”. The next day we were shocked to learn that Rachel has Cystic Fibrosis. The pediatrician set up an appointment at the CF clinic for that day and warned us that Rachel would need to be admitted to the hospital.

We arrived at CF clinic in a state of panic. We knew nothing about CF except that it was genetic. We were seen by a wonderful team of doctors, who managed to both calm us down and educate us a bit about CF. The first few days after diagnosis were terrible. We had a lot to learn quickly. Rachel was also diagnosed with reflux. We had to learn how to give meds and do chest physiotherapy. Rachel was afraid and cried all the time. We thought it would never get better, but it did.

After two weeks in the hospital, we were able to go home. We got ourselves adjusted to life with CF. Rachel has been hospitalized for infections four times including that first admission and she was also admitted for g-tube placement and reflux surgery. All before her second birthday.

Most of Rachel’s problems now are weight related because she just doesn’t eat enough. Thanks to the team at the CF clinic, we have gotten though the rough spots. We are doing our best to keep her healthy. As we approach Rachel’s fifth birthday, we hope to keep her out of the hospital for a long time. We pray for a cure.

Andrea and John