Photo: Vladimir Godnik/Getty Images/fStop My younger son was in the world about 24 hours before a doctor said something might be wrong. The baby had just finished his first bath and then, there it was, released into the hospital room like an animal from a cage: a worry made only wilder by how aggressively we chased it. I was panicked and disbelieving and angry all day. By night, I felt something like subdued. I remember staring down at him while he ate and thinking, Well, here we are again.
Later, I found out the neurosurgery department squeezed us into the surgeon’s schedule after finding out our first baby was born with cystic fibrosis. My husband and I kept saying that to anyone who’d listen, even though one baby’s condition has nothing to do with the other. I think we wanted to make two things clear: that we could take whatever it was the surgeon was going to say, and that we could not believe the ferocity of our bad luck.
The baby was born in June; he was diagnosed in July. Draped in Northern Californian fog, the summer staggered on. We took our older son to his regular doctors’ appointments, and we took our younger son to be examined by his own expanding set of nurses and doctors. A few appointments in, one of them passed along the phone number of a woman whose baby had also been diagnosed with craniosynostosis.
Eventually an OR nurse led us out down a hallway, and over a sky bridge connecting the outpatient building to the inpatient one. My husband held the baby and I held the car seat while she chatted brightly about her own children, how they were in college and it would all go so fast, that soon enough our two sons would be that age.
This was in August, and we had no idea that in October, the FDA would approve a new drug therapy to treat cystic fibrosis. This therapy is a combination of three drugs , and it’s a revelation, expected to work for a much, much larger number of patients with CF than previous drugs. The price tag, however, is familiar — over $300,000 annually. I’m hopeful about it. I’m still scared all the time.
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