Please don’t take the test,” Faigy Klein*, my mentor, mother figure, and best friend, begged. “There’s no need to panic ahead of time.”
“But I need to know,” I said. “What if this baby tests positive for CF? What will I do?”
I was the mother of four little ones, two of whom had cystic fibrosis, a hereditary condition that affects the lungs and digestive system, and which had transformed our lives. My baby was just a year old when I began feeling unwell and discovered I was expecting my fifth child.
Since my husband and I were carriers of the CF gene, there was a 25 percent chance that this baby would test positive for the disease. By now I knew what that entailed—hours of exhausting therapy each day, frequent hospitalizations, and a constant struggle to help our children breathe despite the mucus clogging their lungs.
The thought of having yet a third child with CF threw me into a panic. I was unable to function. My doctor recommended that I take the CVS (chorionic villus sampling) test and undergo an amniocentesis so that I would know ahead of time and be able to prepare myself mentally. But Faigy, the mother of three children with CF, urged me to reconsider. There would be no purpose in taking the test and tormenting myself for months.
And then she said something astonishing. “If this new baby has cystic fibrosis, I promise to adopt him or her and raise the child as my own.”
“Do you really mean that?” I was stunned. Faigy, one of the most dedicated, caring mothers I have ever met, spent many hours each day advocating for her sons and daughter with cystic fibrosis, one of whom had recently undergone a double lung transplant. In addition, she had a large family of healthy children who needed her. But Faigy hadn’t said this just to calm me down.
“It would be my honor and privilege,” she said. “So please don’t torture yourself by taking the test. No good can come of it. Just take one day at a time and trust in Hashem.”
Faigy’s promise was what kept me sane during the harrowing few months that followed. It served as a lifeline when I was feeling overwhelmed and when I spent a long weekend in the hospital with one CF child while my husband was home caring for the other.
“If this baby has cystic fibrosis, I will accept Faigy Klein’s offer,” I told my husband late one night when I was feeling particularly distraught. I was nauseated and dizzy from lack of sleep and the burden weighing on my frail shoulders. “I need to be a mother to our other children.”
My husband didn’t say much; he just listened and validated me. “I think you should take it day by day,” he finally suggested. “Let’s not make plans now. There is a 75 percent chance that we will have a healthy child.”
“I know, but my heart tells me otherwise,” I responded.
I spent the rest of the night tossing and turning despite my exhaustion. Will I be neglecting my other children for a child with serious medical challenges? Perhaps I would be able to manage all three with a full-time nurse or nanny. In addition, how would I be able to face my children one day and explain to them that I had given away their baby brother or sister because I couldn’t handle it?
Besides, who said Faigy was really up to the challenge? Maybe she was just saying it to calm me down. She was in her 40s and had no strength to care for a newborn. How could I saddle her with such a burden? These thoughts haunted me day and night.
The months passed slowly. My doctors kept reminding me that the test was available if I wanted it, but I continued to remind them of our choice not to know. I spoke to Faigy regularly, often several times a day, and she kept reminding me of her promise.