Adults with CF Becoming Parents!

Notes on a panel session held at the 1996 Annual CFRI Conference

Fall 1996

Three couples (one partner in each couple has CF) gathered together to openly discuss their desires to become parents at the 1996 CFRI Annual Conference. They talked at length about issues they grappled with in the decision-making process: wanting to experience families of their own, the status of their health, spousal concerns, whether to give birth or adopt, what kind of adoption, how the demands of parenting might interfere with health, and the comments and concerns of family and friends. Finally, we were introduced to the fruits of their labors (see photos). The panel was moderated by Dr. Susan Markowitz, a psychologist from Menlo Park, California whose primary focus is on families with chronic illness. Dr. Markowitz emphasized the need to keep lines of communication open and also the need to "normalize" the situation (that is, to accept as normal the more intense feelings associated with the stresses of chronic illness and parenting, work through them nonjudgmentally and move on). The panel was joined by Dr. Chris Brown, a pul-monologist and intensivist in private practice and director of the Adult Cystic Fibrosis Center at Cal Pacific Medical Center in San Francisco and parent of a newly adopted child from Nanning, China. Dr. Brown addressed some of the medical concerns that were involved in the decision for a CF adult to become a parent as well as some of the emotional feelings that came up for him during his own adoption process and in counselling potential parents who have CF.

Elyse Elconin-Goldberg who is 37 and has cystic fibrosis, and her husband Craig have been married 11 years. They adopted their daughter Stephanie, age 3, soon after her birth. Elyse and Craig chose an open adoption which allowed Elyse to be present at her daughter's birth. They still see Stephanie's birth parents. Says Elyse, "It's not the act of giving birth that makes one a mom. It's the day-to-day, the being up at night with her when she has a fever or a nightmare.... Choosing to not give birth myself, allowed me to have more energy for her now.... My priorities are my health, Stephanie and Craig, and because of her I take better care of myself. I need to be well to take care of her.... I never thought I could love anything as much as I love Stephanie."

Bob Wright is the 31-year-old father of twins, Dennis and David, age 1. He and his wife of 12 years, Gail, found out two weeks before their children were born that their birth mother (open adoption) was carrying twins. Says Bob, " I worry a lot about getting older and enjoying seeing my kids grow up. I worry that my wife will have to carry the burden of raising them when I get sick. But I wouldn't miss this time for anything. The times that I'm experiencing now are the best times I'll probably ever have." Gail added, "I actually couldn't believe that God would have made this man and not let him have kids, because he's so good at it. God doesn't waste things.... The amazing thing is that we're here and we are talking about CF adults having children. It doesn't really matter what we say. One day we'll have a panel discussion for CF adults with grandchildren."

Patti Zuppan-Hood is a 31-year-old CF adult. She and her husband Ken decided to go through pregnancy and childbirth. Four years ago, Patti gave birth to Nicole. Patti says, "During my pregnancy I swam every day. I only had one course of IV antibiotics and no Tobromycin. Two months before delivery I had a bowel obstruction and had some trouble with premature labor pains. But I recovered and gave birth two months later." Ken added, "At first I didn't want my wife to get pregnant. But she really wanted to do it and I felt it was ultimately her decision. She was strong from swimming and was swimming two laps for every one of mine the day our daughter was born.... My job is to advance my career as much as possible so that Patti won't have to worry about work in the future."

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