A father's memoir of his son's encounter with traumatic brain injury
Chapter 1: Saturday Night, December 29, 2001
Streaking down the New York State Thruway, we bantered nervously about not speeding too fast. It wouldn’t do to have an accident tonight. Twenty minutes earlier we had spoken by phone with a police lieutenant. Dayle and I comforted each other with the thought that our son, Bart, was uniquely qualified to survive a head injury. One of his family nicknames was “bowling ball.” His head was large, perfectly shaped, and remarkably sturdy. When barely a year old, he stumbled head-on into an older toddler at a local pizzeria. The other kid went down like a bowling pin, with Bart hardly seeming to notice. By age three he loved to challenge his uncle or another willing adult to headbutt with him, invariably winning. In soccer, basketball, and baseball, all of which he played in middle and high school, he was a dogged defender, never shy about taking a hit. Opposing players just careened off him. He seemed nearly indestructible.
* * *
Our first sight of Bart as an infant had been in a lounge at JFK airport’s International Arrivals Building. A frazzled escort handed him to Dayle, saying only, “Here. Here’s the strong one.” In the excitement we had no chance to ask her to expand on that cryptic remark. With eleven children arriving on the flight from Korea, the lounge was jam-packed with glowing new parents, relatives, and friends milling around in dazed, happy confusion. Arriving home that evening, we began to get a feel for what she meant. At barely five months, Bart could sit up, crawl, and even stand with someone to help keep his balance. Big for his age, he sported huge hands and feet, and an unusually large head supported by a thick neck. Apparently well fed, he looked like a miniature Buddha. We later learned that foster mothers in Korea, for whom fat is beautiful, compete over who can best “plump up” their little charges.
* * *
Earlier tonight, the police lieutenant told us that the car had wrapped around a tree on a narrow side road, a stone’s throw from Main Street. The village speed limit is 30 mph, and one could hardly go faster if one tried. Surely Bart’s solid constitution and rock-hard head would stand him in good stead. A letter from a dying uncle written later while Bart was in a coma boasted, “In a contest between a tree and your head, my money’s on your head any day.” Luckily the New Paltz Rescue Squad is one of the best in the region. Other towns around Ulster County send new recruits to train with them. The squad would take excellent care of our boy. We tried to take comfort from these and similar thoughts during the desperate ride to the hospital. Cell phone service is spotty in the mid-Hudson valley, but we managed to ascertain that Bart had been taken into surgery. That bit of news burst our fragile confidence. Brain surgery on a minor without even obtaining parental consent — it must be do-or-die. I began to exhibit an odd nervous reaction — rapidly shaking my head from side to side, much like a dog shaking water off its coat; as if trying to shake unbearable images from my mind’s eye. Oddly, it seemed to temporarily dislodge the awful visions.
The evening had begun pleasantly. With our eleven-year-old daughter, Cassidy, sweetly dozing in the back seat, Dayle and I returned home from a Christmas party around 11:30 p.m. in holiday spirits. Sixteen-year-old Bart had spent the previous night at a friend’s house and was scheduled to return home along with a couple of buddies to crash in his room. In rural upstate New York, endless rounds of sleepovers are a way of life for teens. Coming up the driveway, as we noticed every light in the house on, Dayle sighed with relief, “Good, they’re home.” But upon entering we found only the dog, and on the kitchen counter a hastily scrawled note, “Went to Gary’s.” With Bart out, I felt obliged to check the answering machine, which blinked, “1 Message.” It was from a lieutenant with the New Paltz police, asking us to call right away. Assuming what I thought was the worst, I worried that the boys had been arrested. The last couple of years Bart had led us on a very merry chase, in trouble at school and even a near run-in with the law. Lord knows what mischief the knuckleheads had gotten into. The dispatcher seemed reluctant to talk with me, saying I’d have to speak to the lieutenant, who apparently was unavailable. Finally, after a couple of agitating minutes on hold, another officer came on the line. Bart had been in an accident in the village and was on his way to Westchester Medical Center, some seventy-five miles south. Yes, he was alive. No, he couldn’t say how serious it was, but he had been medivaced. Why take him to Westchester when there were five hospitals within thirty minutes of home? And by helicopter no less?
I hung up the phone, shouting to Dayle to call friends and ask them to come by for Cassidy. The Kennedys should plan to keep her at least overnight, maybe longer. Better pack her kit, just in case it was more than overnight. I kept a bag already packed for last-minute business trips and suggested that Dayle throw in a few things. We tried calling Westchester Med’s emergency room. After several futile attempts we finally reached someone who at least tried to be helpful but was unable to find any record of a Bart Goldstein or Groudine-Goldstein. My mind was beginning to cramp a bit, and I struggled to give a detailed description. The voice confirmed that a young John Doe matching Bart’s description was already in CAT scan. It seems he had arrived without any kind of ID. The neurosurgeon on call had been summoned. I felt both relief and dread — relief that we had at least located him; dread that Bart faced neurosurgery nameless and alone in some gigantic municipal hospital. My mother and sister, both with long and distinguished careers as nurses, had filled me with a reflexive horror of hospitals. Mom had been quite blunt, saying simply, “Stay out of hospitals; they’ll kill you.” I forced myself to take deep slow breaths through the belly to stave off the cold knot growing in there, whispering that Dayle should be ready to shove off the moment the Kennedys drove up. We knew Cassidy would be fine with them. If need be she could spend the rest of Christmas break with their daughter Lauren, her best friend. Dayle made a quick call to her oldest sister, asking her to stand by ready to make more calls if needed. Then she phoned our good friend Duffy Violante, formerly a nurse in a brain-trauma unit and now a massage therapist and healer, asking him to light a candle and say a prayer for Bart.
Somehow we arrived safely around 1:30 a.m. at Westchester Med, a sprawling campus of buildings centered around the main hospital with its heliport and emergency room. Struggling to control our feelings, we ran into the building and stumbled smack into Sean Daniels and his parents, Gwenn and John. Glad to see familiar faces, even haggard, shell shocked ones, we all retreated to a deserted waiting area near the recovery room. We caught up a little, learning a bit more about the accident, and getting filled in about the condition of the other two boys who had been in the car, Sean and Kyle. Riding in the front seat, with the protection of seatbelts and airbags, they were both badly shaken up, but physically okay. Bart was riding in the back seat without a belt. There was no one from the hospital to speak with, so we killed some time by going to the registrar’s office to clear up the question of Bart’s identity. Every hour or so we’d call the recovery room to inquire about Bart. Each time was the same: no news. Each time I’d remind the nurse to please call us as soon as they learned anything, making doubly sure she had the extension number for the waiting room phone. And above all else, to please let the surgeon know we were dying to speak with him. It was a long night, but we were very lively and alert, high on adrenaline. My recollection is spotty, but I know we tried to keep things light, joking around, especially with Sean, who, though physically all right, seemed a wreck. A few scant hours earlier he had totaled his family car, dragging Bart’s apparently lifeless body from the wreckage.
Finally, around 5:30 in the morning, we discovered quite by accident that Bart was already out of surgery. On a periodic trip to stretch our legs, we looked in at the post operative acute care unit (PACU) and were astonished to find Bart inside. They hadn’t bothered to call us. It was, after all, a large hospital with many waiting rooms. The surgeon had gone home to get some sleep, and no one was willing or able to give us an assessment of Bart’s condition. Everyone seemed surprised that we hadn’t been briefed by the surgeon.
PACU is kept locked to keep out pesky relatives and their germs. As the parents of a minor, we were buzzed in, along with “Uncle” John Daniels. Nothing in my experience prepared me for what I saw. I could not for the life of me recognize Bart. His entire head and face were swathed in bandages, leaving only small slits for his eyes. There were hoses snaking out of his mouth and nose, and, unbelievably, even a couple coming right out the top of his skull. The misshapen swollen mass of his head seemed held together by clear plastic tape, the kind used to seal cardboard cartons. Beneath the tape I detected staples, the large ones used to tack plywood. I resorted to examining his hands and feet to assure myself that this grotesque, lifeless creature was my precious son. His large feet and hammertoes made the identification conclusive.
Folks in PACU were kind and sympathetic, but shed no light on Bart’s condition. Finally a doctor came in to check on Bart, examining his monitors, including the respirator, which was doing his breathing. Opening his eyes with her fingers, she shined a tiny flashlight at them. Bart did not seem to react to the light, and I thought I caught a hint of resignation in the doctor’s eyes. We couldn’t get her to divulge anything about his condition other than that he was in a coma, both natural and drug-induced. Later, passing us in the hallway and seeing our anguished expressions, she confided, “Listen, whatever happens, it’s going to be a long, long haul for your boy.” A cockeyed optimist, I took this as good news. At least she expected him to live a long time. By now we were beside ourselves, desperate to get a clear picture of the nature of his injuries, what had transpired during the nearly six-hour surgery, and, most urgently, his condition and prognosis. We asked the head of PACU as well as several hospital administrators to help us get a report from a responsible party, but with no satisfaction.
Finally around 8:00 a.m. an exhausted doctor in rumpled green approached us in the hospital lobby where we had huddled for coffee. He said Bart’s surgeon had gone home, but that he had assisted during the operation and could fill us in. Bart had suffered a massive subdural hematoma, a large blood clot between the surface of the brain and its outer covering. The lifethreatening clot had been removed, but his condition was extremely critical. There might be permanent injuries. He added almost as an afterthought, “We may lose him during the next ninety-six hours,” then turned and walked off. We had sent the Daniels home at around 6:00 a.m. to get some sleep, so were utterly alone. Dazed, we sat down in the empty lobby and began to quietly weep. I felt my whole body surrendering to a rising wave of sobs when Dayle jabbed me hard in the ribs, whispering, “Joel, keep it together; we’ve lots to do.” I snapped to it and we made a to-do list, then called our old friends Lou and Lisa Badalato who lived ten minutes from the hospital. Catching them leaving for work, we asked if we could crash at their house for a few days. Stunned by the news, they agreed to leave a key for us, giving us freedom to come and go as needed. Next I called my nephew Scott Marsel, a prominent internist in Florida. After tracking him down and giving him a quick update, I asked him to stand ready at a moment’s notice if questions, concerns, or decisions came up. He suggested that, once Bart stabilized, we might want to move him to a top New York City hospital, possibly New York–Presbyterian Columbia University Medical Center. We called the Kennedys and told them to expect to keep Cassidy for a few days and also to request prayers from friends in our Korean culture camp.
That morning Marlene Kennedy sent an e-mail to the Mujigae camp committee. Mujigae, a Korean heritage camp in Albany for adopted kids, had been an important part of our lives every summer since Bart was six. Her e-mail read, “Last night Bart Goldstein was in a serious car accident and was medivaced to Westchester Medical Center. His family has requested your prayers, whatever your denomination. Wouldn’t it be great if we could surround him in an embrace of Mujigae love and positive healing energy? The next seventy-two hours are the most important. Please don’t call the home; they are down at the hospital. Their daughter is staying with us for now. When I find out if he can receive cards I will e-mail you again.”
The following day she wrote, “Bart is in the WMC pediatric ICU. His condition is pretty serious. He is in a level six coma. Right now a ventilator is helping him breathe, but he seems to be doing more of the work now. For the next thirty-six hours the focus is on keeping the brain swelling down. At the current time he does not seem to have any other internal injuries, which is good. When he first was admitted he needed an operation to reduce the pressure on his brain. The surgery took five hours and appears to have been successful. It is now a wait-and-see time. Dayle called and said that even if he comes out of the coma relatively quickly he will need to go into rehab and it may be a long haul. They have asked friends and family to pray for a speedy and complete recovery. Feel free to pass on info to Mujigae friends. We should know more in the next few days. You can always e-mail me.” Marlene sent similar succinct messages, which became known as “Bart updates,” every day or two for the next four months. The updates relieved Dayle and me of the necessity of speaking daily with the many worried people seeking information about Bart’s condition. We received the e-mails as well, so in addition to cutting down wear and tear, it kept us abreast of what other people were hearing about Bart.