Dreaded parenting moment: there is something wrong with your kid and you don’t know what it is.
Two weeks ago, I was at work when my phone erupted with a series of texts. My twelve-year-old son, “Jack,” was using a friend’s phone to text me from that friend’s house, where he and my nine-year-old daughter, “Emmie,” were spending part of the day. Emmie had had a seizure, and I needed to come to the house right away.
There followed a stay in the emergency room, a CT scan, an EKG, a blood draw, some meds and a very, very long string of questions. Since then, we have been to and set up consults with pediatric cardiology and pediatric neurology. More tests. A finding, but no answer. Answers to questions, but no definitive findings. No comprehensive theories, but lots of possibilities. It might be Nothing. There’s a good chance it’s Something.
For the first time, we faced the emptiness of not being able to answer any of the questions asked of us regarding our daughter’s family history in a situation where such information could provide real assistance to the physicians treating her. Is there a family history of epilepsy? What about heart defects or disease? Our daughter is adopted from South Korea, and, like so many adoptees, owns a history that is unknowable even to her.
“Is there any chance of finding anything out?” they asked.
We shook our heads. They nodded and moved on to the next set of questions.
Contrast this exchange with the one I had recently with my children’s primary care doctor, with whom we met to discuss the migraines that have lately begun to attack Jack. (Jack’s appointment with the neurologist is the day before Emmie’s visits begin. Who knew I’d be spending so much time in pedi neuro?) I’ve been visited regularly by migraines since I was nineteen, and I take daily medication to try to control them. I shared this history with the doctor.
“Well, given everything you’ve told me and the maternal history, it’s pretty clear he’s got migraines with aura. He should see the specialist to make sure and to figure out the best way to address it in a younger patient, but I’m confident that’s what we’re dealing with here.”
The family history wasn’t the key piece of information, but it did offer an important variable in the diagnostic equation, along with symptoms and patient history. A plus B could equal a couple of things, including migraines, but A plus B plus C almost definitely equals migraines. See a specialist for confirmation and begin treatment.
Like many adoptees, Emmie has no C.
I sat beside Emmie in that emergency room bay, watched doctors and PAs draw her blood, test her reflexes, place Zofran under her tongue to ease her nausea, lift the flimsy johnny that dwarfed her small body to place electrodes on her chest, all the while wondering what might be amiss with her heart or her brain or the electrical impulses that flowed from one body part to another. I answered every question at least five times, probably more. She did the same, with admirable patience for an exhausted nine-year-old. I asked questions, received and processed information. I wanted THE answer right there, in the ER, even though I knew that wasn’t going to happen. And I wanted to give the doctors every piece of information that would help them solve the equation, but I couldn’t. I couldn’t give them Emmie’s C.
As I write this, Emmie seems to be doing well. She’s cleared for all normal activities except swimming and driving a car. (Ah, the beauty of form instructions.) For a little girl who can be, well, let’s say, dramatic, she’s managing the medical soup of tests, concerns, doctor visits and semi-comprehensible talk with trust, maturity and good spirits, even as I know she’s dissecting every word she hears.
We can’t fill in that medical family-history blank for Emmie. What we can do is be there for her through all the tests and encourage her to ask all her questions, both about her health and about the missing family she’s never known. At least in the first case, we hope to have answers soon.
We, Emmie’s family, will enjoy a grateful Thanksgiving on Thursday. We’ll be thankful for the health we have, and thankful for each other. We wish all of you a happy and gratitude-filled Thanksgiving, too.