I was born in November of 1971, about 2 1/2 years after my twin sisters, and fifteen months before my brother, in the wee hours of the morning after Thanksgiving day. I was born 4 pounds, 15 ounces, or as my mom called me, “her bag of sugar”.
The first problems that came along were digestive. Shortly after birth, my mother noticed something different about my diapers – the contents weren’t quite the same as that of my sisters when they were infants. Most people with CF are Pancreatic Insufficient – which means that the thick mucus common in CF patients actually blocks the Pancreas from releasing digestive enzymes. That results in loose, foul-smelling stools, gas, and a plethora of digestive problems. In babies, it can lead to poor growth known as “failure to thrive”, a puffy belly after eating, mucus in the stool, and chronic diarrhea.
Something else that my mother noticed was that when I got sick – which all babies do – it took longer for me to get better. Several times in that first year, I was on antibiotics for bacterial infections, and within a few days of finishing antibiotics, I’d get sick all over again.
As those first twelve months went by, I continued to lag behind in growth. Right after my first birthday, my sisters and I all ended up getting sick. While it was a typical flu-type virus for my then-3-year-old twin sisters, it became more of a problem for me. I just didn’t get better. I developed Pneumonia and was admitted to the hospital for 10 days. I was so small that it was nearly impossible to get a vein for IV fluids, and they had to put it in my forehead. During that time, my pediatrician suggested they test me for Cystic Fibrosis.
There were no other people with CF in my large family on either side. My mom, one of eight, and my dad, one of four, both come from European stock, where CF is most common. My mom said that she had heard of CF while a teenager and someone came door to door collecting money, but didn’t know too much about it.
Well, both my parents were in for a shock and a lot of new information.
I had the Sweat Test – the “gold standard” for diagnosing Cystic Fibrosis. The hospital released me a few days before Christmas, and my parents would find out the results sometime in the next week.
I can’t imagine what it was like that Christmas. It couldn’t have happened at a worse time. My mother was 7 months pregnant with my brother, my sisters – twins – were only 3 1/2 years old, and my father had suffered an accident at work that put him in a different hospital and would eventually lead to years of treatment.
Just a month past my first birthday, a few days after Christmas 1972, the phone call came. I tested positive for CF.
My mother said that it was like everything exploded at once. The deep cough, the constant sickness, the diarrhea, the salty taste on the skin – it all made sense. I hear often that the biggest fear is that of the unknown. My parents finally had an answer, but it just lead to more questions, living under constant uncertainty. What would my future hold? Would I have a future? Back then, the statistics were grim. Most kids with CF wouldn’t make it to adulthood.
But somehow, 42 years later, here I am. And this is where my story begins.