When your child is the patient: A nurse’s perspective

Meaghan O’Keeffe, RN, BSN, is a mother, writer and nurse. She worked at Boston Children’s Hospital for nearly a decade, in both the Cardiac Intensive Care Unit and the Pre-op Clinic.  She is a regular contributor to Thriving.

Meaghan_OKeeffe_1I have always prided my nursing style as being deeply rooted in compassion. I put myself in the shoes of the families that walk through the rotating doors of Boston Children’s Hospital and acted accordingly as their nurse.

But now, after a brief health scare with my oldest child, I better understand that truly identifying with the parents of sick children is much harder than I thought. It’s difficult to really appreciate how crushing it can feel.

I think I get it now. At least a little more than I did before. And while my Sophie’s recent health issue was only a brief scare that eventually turned out fine, the whole experience gave me a better understanding of what “worried sick” truly means.

I discovered that when your child is ill, “worry” is an understatement. I learned that when your child is sick—and when no one seems to know what’s wrong—the term “worry” doesn’t begin to describe the gut-twisting, throat-closing dread that a parent feels. (Quiet, sinister terror would be more appropriate.)

And you aren’t just troubled by her symptoms or what the diagnosis could be. You feel awful for dragging your child—who’s so sick she doesn’t even want to sit up—to the doctor. You worry about taking her brother to their day camp by himself, because he’s so used to having her there. You worry that the grandparents will be anxious, that your husband won’t be able to handle it and that you aren’t spending enough time with your other kids, because your sick child needs you so much.

Sophie-1You worry about co-pays and health coverage and how much time you can take off from work (and who will do your work if you aren’t around) and who will pick up your kids if you’re stuck in a hospital room. You worry about updating all of the people who care tremendously about you and your family. You worry about talking too much about illness.

In Sophie’s case, she had a strange group of symptoms that didn’t quite add up. We took her to see doctors, but no one could say what was wrong. For seven days, I felt like I was teetering on a cliff—at any moment I could burst into tears—and I couldn’t shake the feeling that my whole world could crumble in an instant. I only lived this way for a week—a small amount of time when compared to what some families are forced to deal with—but it felt much longer. Like an excruciating time warp.

I worried about putting her through having her blood drawn, about her being afraid on the x-ray table. And then I worried that, if something was truly wrong, a simple lab test and x-ray would be the least of the scary things she would need to encounter.

Sometimes being a nurse when your child is sick is a wonderful thing: I can rule out many illnesses, and I understand pathophysiology. I trust my clinical judgment and my mother’s intuition.

But when things didn’t add up, I got scared. When I saw that concerned look in the nurse practitioner’s eyes as she examined my child and heard that “this is unusual” tone in her voice, the seed of terror really took root.

I have a better understanding of the total and utter paralysis the parent of a sick child has to face on a daily basis. Of being afraid to make any decisions and being terrified to have to “wait and see,” all at the same time.

And as she started to feel better, I became afraid to hope. Every time she was quiet, an arrow pierced my heart. I was so scared that she would say she didn’t feel well. Again.

Sophie-and-meaghanFortunately for us, my daughter has made a full recovery. In the end, it was most likely just a viral illness that presented itself in a very unusual way. I feel an enormous sense of relief and gratitude for our good fortune, (and increased empathy for families who aren’t as lucky.) Today Sophie’s energy is back to normal. She hasn’t had any fevers and is eating and playing and fighting with her brother. (I never thought I’d say it, but hearing them fight soothes my heart. And hearing them laugh brings me greater happiness than ever before.)

Being a parent, when things are good, is 90 percent joy and 10 percent fear that at any minute it can all be ripped away.

I am lucky. Sophie is better. I’m at least 90 percent sure.