The surgery for scoliosis that went frighteningly awry

First in a series.

These days in our household, we refer to August 2009 as “the worst summer vacation ever.”

It’s a grim sort of joke. There was no vacation that August. There was an operation that was supposed to keep our daughter, Abby, who has Rett syndrome, in the hospital for 10 days or so. But things went sideways, and her stay ended up being three times that long.

Don’t worry. This story ends well, thanks to the work of Abby’s medical team. But my wife, Donna, and I would just as soon not go through the trauma again, thank you. And we hope like hell that Abby has little memory of the ordeal.

One of the many problems that frequently accompany Rett syndrome is scoliosis, and by 2009, when Abby was 12, the curvature in her spine could no longer be ignored. It was at 68 degrees, well past the 40 degrees considered “severe” on the scoliosis scale, and her doctors said it would only get worse. The spine was so twisted that it was pushing organs out of position and threatening their ability to do their jobs.

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So we booked Abby for spinal fusion surgery at what is now Nemours Children’s Hospital in Delaware, a 90-minute drive from our home in New Jersey. She was to end up with rods running from her neck to her pelvis, with screws inserted into the bones of the spine holding things in place. It sounded terrifying to us, but the surgery is actually quite common, and her surgeon had performed it countless times, including on other patients with Rett syndrome.

That’s why we picked him, and we expected a trouble-free experience for all involved, including Abby. Donna and I arranged to spend a few nights in the nearby Ronald McDonald House, the extended-stay facility for families with a loved one in the hospital, and then planned to tag-team the recovery period by commuting from home.

We had no idea how important those cheap accommodations provided by the Ronald McDonald House Charities would be for us. Thirteen years later, when I was an obituary writer at The New York Times, I was gratified to be able to write the obituary of Audrey E. Evans, MD, the pediatric oncologist who came up with the idea for Ronald McDonald Houses after realizing that her patients’ families were often struggling to pay for hotels when their children faced extended hospital stays. Certainly, if we had needed to pay for a hotel when Abby’s surgery turned into a monthlong nightmare, we would probably still be choking down the credit card debt.

‘There’s been a complication’

The surgery was scheduled for July 30; we arrived in Delaware a day or two early, so Abby could be prepped for the operation.

“Well, they wheeled Abby off to surgery at 8:20 a.m. Thursday,” Donna wrote in a journal she kept on the website caringbridge.org to update family and friends. “At 10 the nurse came out and said all the many tubes and IVs were in place and the doctor was ready to ‘go in.’ We met with the doctor beforehand, and he said it could be 6 this evening before he’s done. ‘I’m a very slow surgeon,’ he said. ‘Good,’ we said.”

I sent Donna back to Ronald McDonald House to get some rest while I kept vigil in a hospital lounge, expecting an uneventful 10-hour wait. But a few hours into the operation, the surgeon came into the room, looking drained and somewhat stunned, and said the words no one in a hospital waiting room wants to hear.

“There’s been a complication,” he said.

Abby’s spine had been fully exposed and three of the many screws had already been affixed when she went into distress — she turned red, her blood pressure dropped, her breathing became labored. The team had to abort the surgery and go into all-hands-on-deck mode to stabilize her. Later, they determined that she had probably had an allergic reaction to one of the drugs used to knock her out, something no one could have foreseen, since she’d had no problems the few times that she’d been anesthetized previously.

I called Donna at the Ronald McDonald House.

“Sorry,” I said, “but nap time’s over. You’d better come back up here.”

And that began the worst weeks we’ve had in our 29 years as Rett syndrome parents.

Next week: The long road back from the brink.

Note: Rett Syndrome News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Rett Syndrome News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Rett syndrome.