Back in 1997, my family's world was turned upside down. It was no devil that did that, but rather the most adorable baby boy. He was born as one of the chunkiest babies imaginable--over 10 pounds. By 5 months, after an ear infection for which he was prescribed an antibiotic, he went from the 99th percentile for weight to the 5th. Then he dropped off the charts completely. He had saggy elephant skin and a puffy face. Those of you who work in the health field probably recognize those signs--he had severe malnutrition and protein edema; he was starving to death even though he was eating food. He developed quarter-sized black blotches on his torso. His electrolytes were incompatible with life. (You can google "Pseudo-Bartter Syndrome if you would like.) The doctors though he had leukemia. He didn't. It took 3 months and a lot of detective work--yes, primarily from our family--until he has a diagnosis. Our baby had cystic fibrosis (CF).
I won't tell you tonight about the full story, but the upshot is that boy is now a healthy young man, husky once again, in his junior year at BYU. And he has two younger brothers with CF, both healthy.
If we had known then that things would turn out so . . . right, I am not sure we would have believed it then. The doctors said the life expectancy was mid-twenties. We were asked to pound his back morning and night. We were told he would spend his life in and out of hospitals, and no doubt die of lung failure, which feels like a long, drawn-out suffocation. The nurses told our other children not to become too attached to him, because he probably would not live very long.
We had a huge choice to make. It was a spiritual choice. I will not tell the journey we took, at least not tonight, but we felt it was confirmed to our hearts that it was right that John had CF, and that good would come from it. There was one moment where our baby was sitting on the floor, reaching for the full moon that he saw out the window, andhe laughed and laughed at itas a friend asked us, "Do you not think this life is precious to him? Do you not think he is glad to be here, right now?"
We went on to have two more children, both with CF, because we knew with every fiber of our beings that this was right. Somehow, right. And that their lives were valuable and precious, not only to us, but to them.
And so I was overjoyed to learn today that the governor of Arizona signed into a law passed by the state legislature making it illegal to abort a fetus due to genetic mutation. It is now illegal to abort a fetus with cystic fibrosis.
Yes, I know someone can just lie, and the deed will still be done. I know that. But for a state to say that the life of an unborn child with CF is as precious as the life of an unborn child without CF is an important and good statement to make. You see, if a fetus is diagnosed with CF in utero, there is a 98% chance that it will be aborted. That thought breaks my heart, especially as there are now highly effective modulator therapies that help normalize the condition.
How much poorer this world would be without my children with CF! How much poorer is our world for all the children with CF that were never allowed to draw the breath of life? I shudder to think of it.
My deepest gratitude to the state of Arizona for their principled stance!