Planning one's fammily while coping with cystic fibrosis (sort of)

October 30, 2002

Although I have cystic fibrosis, and my first two children were carriers,

(because I have cystic fibrosis), I did not know that my husband could

be a carrier (this is in the Merovingian Period, or Pleistocene or some

thing like that) until his nephew's diagnosis was changed (accurately)

from coeliac disease to cystic fibrosis and we found this out when I was

about four months pregnant with #3. My husband and I looked each oth

er in the eyes (blue to dark brown, steadily), gulped and said simultane

ously: " Do you get the feeling that. . . . .? " And we both knew. And we

were both right--and by anyone's standards, it was far too late to make

a change. Kid#3 had a hard time the first few months and even the first

few years, and had pneumonia about five times by age nine, and then

sort of snapped into shape; we had better enzymes by then; the ear

infections were controlled by the famous TUBES, BUT THOSE SINUSES WERE A

WRECK and were dealt with later through surgery.

Kid is now 36, doing well, working full time, is an electrical engineer

who designs stuff like EBCT scans, CT scans, etc. Only 5' talll, but

brains to compensate! We got used to it all: I was the practice run,

I guess, growing up with cystic fibrosis in a long-forgotten era, and even

I made it. So take heart. Those gloomy stats are falling fast, and the

newer data suggests a more optimistic outlook--which does NOT mean

that the whole family will not go nuts in the meantime! Families DO!

Love to all of you great parents and prospective parents out there,

n Rojas

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