Monday, April 25, 2011

Parenting and Fear (Kate Altman, M.S.)

In my four months as a parent, I have already become acquainted with the incredible joy having a child affords--as well as the intense vulnerability. A couple of days after my daughter was born, she had the "heel prick" test in the hospital, which tests for a variety of metabolic diseases, most notably PKU. Beyond feeling sad when she cried as they pricked her heel, I didn't think much about the test and promptly forgot about it once we left the hospital.
About a month later, I was sifting through a pile of mail I'd been ignoring for a couple of weeks, when I noticed a letter from the State Department of Health. I opened the envelope and found a very official-looking, very scary letter from the health department, asserting that I must have my child retested IMMEDIATELY for PKU and other diseases. The letter stressed that the diseases the tests looks for are very serious and often fatal if not treated immediately, and that I must contact my child's doctor IMMEDIATELY as it was URGENT I have her retested. Included with the letter was a pamphlet describing PKU and the other metabolic disorders the test is used to identify.

I felt slightly alarmed, but not terrified as I called my daughter's pediatrician; after all, she was a month old at this point and had not displayed any troubling symptoms. The pediatrician's office redirected us to the hospital where my daughter was delivered, which then initiated a series of confusing phone calls, transfers, and hang-ups. Essentially a bureaucratic snafu meant my daughter's "irregular" bloodwork results had never made it to her pediatrician, and because I had not read and responded to the health department's letter, her file had been marked: "Parent Noncompliant."

I was on the phone for nearly two hours with a variety of information-less sources, including the pediatrician, various departments in the hospital, and the health department. As I was on hold (multiple times), I began to read the pamphlet and learned all about the health problems--such as cystic fibrosis and maple syrup urine disease--that the test identifies. I started to imagine my child with each of these diseases and what it would mean for her and our family. My heart began to race and, for the first time, I experienced what a parent feels when they begin to suspect that something may be wrong with their child: utter terror. By the time I finally spoke to someone at the hospital who actually had my daughter's file, I had worked my way from denial to the assertion that I would wholeheartedly adopt whatever cause would help my daughter's condition, and would do whatever it took to fight for a cure. Meanwhile, I rocked my baby in my arms and told her over and over that I loved her.

In the end, it turns out that the "irregularity" indicated by the test was merely that the phlebotomist at the hospital had not drawn enough blood to get an accurate read on the test. I took my daughter back to the hospital to get re-tested, and she passed this time.
Many parents--too many--do not experience the relief I experienced in this particular situation and their worst fears are realized when their child is diagnosed with cystic fibrosis, cancer, autism, or a variety of other diseases and disorders. There are not enough words to explain the vulnerability that accompanies loving a child and facing the real possibility that he or she might suffer--and that we can't always "fix" the problem. And I am only four months in to parenting, and can't know what the future will provide.

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