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Having a Child With a Serious Illness: Jo Anne's Story

Reviewed by: Steven Dowshen, MD

When Jo Anne McKinney's 4-month-old son was hospitalized for surgery to repair a problem with his lung, she expected to take him home in a matter of days. But while Grant was in the hospital, doctors discovered that he had cystic fibrosis (CF), a disease that causes thick mucus to clog the respiratory and digestive systems. The doctors told Jo Anne that her baby might not survive the next few days.

She remembers how she felt when she arrived in the intensive care unit (ICU) — how she was in awe of the other parents there; how she assumed she would be bringing Grant home to recover and grow up healthy and happy.

"I wondered how they could possibly deal with a critically ill or injured child. How did they stand it? What kept them going?" Jo Anne said. "Now I was one of them."

Grant made it through the next few days, and for the next two decades he and his family contended with his CF and everything that went with it: the constant lung infections that drove him in and out of the hospital, the questions from curious kids and rude looks from strangers about his oxygen tank and feeding tube, and having to educate anyone who was curious about his illness.

Thanks to a double-lung transplant in 2000, Grant is doing much better now. He is 23, in college, drives a car, exercises, runs, spends time at the beach, and goes to football games. Grant and Jo Anne created The Big Fun Foundation, a nonprofit group that creates Big Fun Boxes filled with toys and fun activities for kids who are in the hospital.

Jo Anne hopes that sharing her experiences can help other parents of children with a serious illness. These strategies helped her and Grant cope:

  • Writing down questions. Because we couldn't really absorb a lot of information from the doctors, we would write our questions down as they came to us. Every day, when Grant's CF treatment team would come in and spend time with us we would have those questions for them. We wrote down their answers so we could refer to them later.
  • Reaching out to others. It really helped us to get to talk to and hear about kids with CF who were 5, 10, 15, and 20 years old. That sounded like eons to us and gave us hope that Grant would make it to at least age 5. We talked to a mom with teenage twins who'd played junior varsity football. The respiratory therapists who'd come to Grant's room would tell us about patients that had lots of spirit and fight. We clung to the fact that it sounded like these patients had some sort of normal existence and maybe we could survive this if our life could be like that.
  • Reaching out at school. As Grant grew, each school year I wrote a letter to his teacher. I told her what cystic fibrosis is, that it's not contagious, and let her know that it will cause him to cough a lot (and loudly, so he had to have a plastic cup nearby in case it caused him to throw up). I gave her a sense of what to expect him to be able or not able to do. One of the things I stressed was that she could call me at any time, she could share the information with anyone, and I would be happy to talk with any parents about it. I was fortunate when Grant was in kindergarten and the first grade — I could volunteer in Grant's classroom a half-day each week and go along on most field trips. I think other students and parents who saw us interacting "normally" were reassured. Also, everyone at school got to know Grant or at least know about him and acceptance was broad. He was allowed to go to friends' houses and have friends over and play around the neighborhood. So, fortunately, we didn't have to deal with whispers or unkind remarks about the "sick kid."
  • Working with others to accommodate Grant's needs. When Grant was in middle school, he was allowed to complete written reports on the different sports his classmates were participating in for physical education because there was not an actual provision for not having a P.E. grade. He was also allowed to leave class just a few minutes before the bell for the end of the period or the end of the day, to take medicines or treatments and to get a head start getting to his next class.
  • Taking strangers' questions in stride. Occasionally, when shopping, sightseeing, or just going through the routine weekend, someone might hear Grant cough and say something like, "It sounds like he needs to be home in bed." I'd just confidently state that he did not have a cold, he had a noncontagious disease called cystic fibrosis. Most of the time, that would do it. Occasionally, we'd get the follow-up question "What's that?" and it gave us a chance to create a little awareness. I'd say, "It's an inherited disease that affects the respiratory and digestive systems. Those who have it are born with it and there is no cure."
  • Being prepared with answers. It really helps to prepare some stock answers to questions that you get all the time. Here are a few of ours:

    - When asked "Why do you cough so much?" Grant would say, "I have a respiratory disease, but I'm not contagious."

    - When asked "Can my daughter catch what he's got?" I would say, "No, but I don't blame you for asking."

    - When asked "What's wrong with him?" I would say, "He has cystic fibrosis" and not make myself available for another question. I was firm and strong, but tried to avoid being rude.
  • Staying away from negative or energy-draining people. It's important to protect yourself. People will ask the most unbelievable questions or offer the darndest opinions just right out of the blue. When Grant had his tracheotomy tube (a tube that went through his neck into his windpipe to help him breathe better), we'd have some person in the grocery store checkout line ask, "Is he going to die?" I'd answer, very matter-of-fact, "Aren't we all?" When Grant was hospitalized, I would stay away from parents who wanted to complain or try to "one-up" each other. If someone's child was in worse condition than Grant, I'd just count my blessings.
  • Acting strong, even when I didn’t feel strong. I think what worked better for me than anything was, in public, to look and act confident even when I was scared out of my mind. It's amazing the number of people who have told me that I always looked so "together" or our family looked "so normal and happy" and that it encouraged them through something harder or easier. Practicing looking "matter of fact and caring" with Grant served our entire family well. I never let him see embarrassment or shame on my face if he threw up, couldn't stop coughing, or something like that in public. Grant and (his older sister) Elizabeth took their cues from us. And it helped them build their confidence.
  • Nurturing Grant's independence. We helped Grant learn everything possible about his condition and care. Grant has come a long way from that baby in PICU who knew only when he was wet, cold, hungry, or mad, to a 23-year-old young man who runs his own life, including managing lots of doctors appointments, tons of prescription refills, needs for medical supplies, a full-time load of courses in college, and a foundation.
  • Keeping perspective. It helped me to remember that there is always someone whose plight is worse than mine. I might be exhausted after spending several nights at the hospital, but then Grant and I would have a day of being as silly as we could be and I'd realize I was feeling less tired. As he grew, and CF research outpaced so much other research and bilateral lung transplants became possibilities, we'd take heart in the fact that we still have Grant.
Reviewed by: Steven Dowshen, MD
Date reviewed: May 2006