High Dewpoint Depression Gas Plant in Karak, NWFP, Pakistan, designed and photographed by author
A Novel By Brian Howard Seibert
© Copyright by Brian Howard Seibert
In The Shadow of TASU (The Autism Spectrum Umbrella)
Chapter One: Islamabad, Pakistan, June 2004:
Islamabad was bright and sunny and the streets were wide, the traffic was light and the Marriot Hotel was an enclave of international travellers. The ornate lobby had a stateliness about it and the fifth floor was business executive level. I entered my room, sat on the bed, plunked my head in my hands and I cried. And I cried. And the palms of my hands were soaked and soon steamy little rivulets of salty brine ran down my cheeks and my arms and it tingled where they pooled and beaded. A score of years had passed since I’d cried so hard, a score or more since my parents had phoned me and told me my brother had drowned. This time the news was not as tragic, but near as bad.
“Your son has Autism,” they said. “He’ll likely never talk. We have special programs. We can begin by teaching him sign.”
They were wrong, of course! I knew my son didn’t have Autism. I was at his birth…videotaping…recording his entry onto this fine blue planet as may wife let out a final cry and collapsed in relief, his first kick as the nurses cleaned him, his first grasp with clutching little hands as, camera under arm, I was encouraged to cut the cord, his first breath that didn’t seem to want to come, his first cry that never came. Recording half of his pink little body turn blue, his left half, I think, but I have it on tape. Recording the doctor pumping oxygen through the tiniest of bags and taping the nurses massaging his entire little body, and still the blue would not subside, and a new sense of urgency swept through our team of marble clad muses. Then the camera was on the floor as I pitched in and massaged a tiny blue leg with the arm I could wedge between the tight circle of nurses. I wanted to touch my son, to have a hold of him in case he didn’t make it. “It’s okay,” I cried as I massaged his leg. “It’s okay,” I lied as they rushed him off to emergency.
I was in Islamabad for a week of meetings on a gas plant we were building in Canada for installation in the North West Frontier Province of Pakistan just 35 kilometers from the Afghan border. It was a hazardous operations or HAZOP Study meeting that was held to review the volatility of the gas treating process but addressed nothing of it’s volatile location. My son had cried when I left him, left Edmonton, and his tears followed me, followed my flight and I’d cried a little on the plane, alone in the back in the night with a full moon lighting the clouds from above and Asia sweeping by below. The tears had tracked me to my room in the Marriot that first night and it seemed that I cried so hard and so long that the tears might never stop, but when the tears, the inconsolable tears began to fail, when they dwindled and faltered and finally died, there arose in their place a fierce determination. They were wrong! It was not Autism. It was brain damage, lack of oxygen brain damage. My son had suffered a brain injury at birth.
I’d seen this sort of thing before. I’d grown up with it. At six months of age, my younger sister had suffocated on a cloth and plastic bib in the night and my mother found her still and blue when she should have been crying for a feeding, and they’d saved her, or, nearer to the truth, she’d refused to die. After a day of neglect in a small town hospital a nurse whispered for my parents to please whisk her to Edmonton as they weren’t doing anything for her where she was. In Edmonton she got oxygen and warmth and a little bit of care. She survived the ordeal and we watched her as she grew and developed – too slowly, from a mental aspect. Too slowly to go to playschool. Too slowly to go to kindergarten. Then at five years of age the convulsions started. Cries of pain and thrashing in bed, doors opening and closing and cars starting in the middle of the night and we knew from the whispers of our parents that our little sister would never go to school with us.
My second night in Islamabad was without tears. I rationalized that if lack of oxygen was the cause of my son’s brain injury, then perhaps some form of oxygen therapy could provide a cure. I envisioned an oxygen tent type apparatus that my son could sleep in at night, something that could provide his fragile mind with the oxygen it required to repair itself. My room had high speed internet so I surfed the web searching for oxygen equipment…tents, generators, bottles, masks. I began to research the administration of oxygen as a medication and was somewhat disconcerted by a phenomenon called oxygen toxicity, whereby prolonged exposure to high levels of oxygen could cause lung damage and a host of associated side effects. This was a problem that would have to be overcome before an extended use oxygen tent could work effectively.
While surfing the internet on my third evening at the Marriot I learned that a form of oxygen therapy already existed. It was called Hyperbaric Oxygen Therapy, or HBOT, and it handled the oxygen toxicity problem I had encountered the evening before. By administering 100% oxygen to a brain injured patient at elevated ambient pressures of 1.5 to 2.0 atmospheres absolute, enough oxygen was driven into the bloodstream through partial pressure absorption in a one hour period to achieve therapeutic value before oxygen toxicity could become a problem. HBOT, I learned, was used as a treatment for a number of medical conditions including nitrogen embolism (divers bends), flesh eating disease, Cerebral Palsy, Autism and Anoxia as well as Hypoxia. It was originally developed in the 1850’s in Britain to help brain injured drowning victims that were often resuscitated after lack of oxygen had already caused brain damage. It seems to have had limited benefit in many of these cases but was experimented with for many other conditions often with disastrous results. It appears to have come into stride in the 1950’s when it became the definitive treatment for deep sea divers suffering from the bends. It is now also used to treat brain injuries caused by exposure to carbon monoxide and hydrogen sulfide gas poisoning, of particular interest to those, such as myself, who design sour gas plants and gas treating equipment.
That night I got a phone call from my wife who was at a hospital in Edmonton. Austin had begun a series of brain seizures and she had rushed him to the hospital to see what they could do to stop them. Austin had started to get minor seizures but they were now getting so serious my wife had to rush him to emergency for care. This event placed an added urgency to my recent research.
On my fourth night in Islamabad, I did further research on Hyperbaric Oxygen Therapy and I determined that this was the therapy of choice for treating my son’s brain injury. The next morning, as I got ready to fly back to Canada, I read an article in a Pakistani newspaper about the only person in the United States with Mad Cow Disease dying. This woman had emigrated from Britain to Florida and had not been feeling well for several years, but her condition was misdiagnosed as depression. She returned to Britain to visit family and friends and was diagnosed as having Jacobs Cruse Feldt Disease. On her return to the States she began taking Hyperbaric Oxygen Therapy dives, not to cure the disease, but to mitigate the damage caused by the disease. It was the first time that I had ever read about HBOT in the news and it was just after learning about it on the internet. When a Canadian reads a Pakistani newspaper story about an American dying from a disease contracted in Britian one has to stand back in wonder at what a global village the planet Earth has truly become.
When I returned from Islamabad I decided to get my son Austin into Hyperbaric Oxygen Therapy. I had only located facilities in the United States, but I reasoned that if I had to take him to the States to get it done, then that is what I would do. In the meantime I began a program of Swing Therapy to try to get Austin talking. He was almost two years old and we couldn’t get a peep out of him.
Both my wife Ann and the county nurse believed he would never talk and they began teaching him sign, but they agreed that the Swing Therapy was good for Austin’s vestibular activity so they encouraged me to give him ‘Tick Tocks’, although they doubted it would get him talking. I would pick Austin up by his hands and swing him from side to side in front of me then throw him off to one side onto our couch and he would laugh and bounce off the couch and onto his feet and come running back to me for more. But I wouldn’t let him take my hands unless he said a word. I started with the word ‘three’ because when I carried him down our stairs I would always count them off and he would chirp an “Eee” when I counted three, so he started repeating “Three” after I said “Three” and I would grab his hands and give him another ‘Tick Tock’ and throw him off onto the couch again. Sometimes we would do this for half an hour straight and my arms would get so sore they were ready to fall off, but I got Austin up to a six word vocabulary in three months of ‘Tick Tocks’, words like ‘Go’ and ‘Stop’ and ‘One’ and ‘Two’ and, of course, that first breakthrough word ‘Three’!
In my search for an HBOT facility I managed to find clinics in Vancouver and Toronto, but it was our own family doctor who told me about a more local HBOT provider in Red Deer. My wife and I had taken Austin in for a check-up and I told the doctor that I thought that Austin had Post Natal Hypoxia and that I intended to get him into Hyperbaric Oxygen Therapy.
Our doctor bluntly asked me, “Why can’t you just accept that Austin has Autism?”
“Because,” I answered, “five minutes after Austin was born I told my wife there was a fifty-fifty chance that Austin would have brain damage from lack of oxygen and there’s only a one in five thousand chance he would have Autism. I’m playing the odds here.”
“Well it used to be one in five thousand,” our doctor replied, “but it’s a lot more common now. There’s an Autism epidemic occurring worldwide.”
“My son is getting HBOT,” I said firmly. Our doctor was very thin and frail and unhealthy looking for a man ten years my junior.
“There is an HBOT operation in Red Deer,” he gulped. “I don’t know what they’re called…just that they’re in Red Deer.”
I drove to Red Deer the next week and met with some associates in the gas compression business and after the meetings I checked into the HBOT operation. I visited with the local nursing authority, but they knew nothing of it, then one nurse passed me on to the Cerebral Palsy Association representative and she knew all about the operation. “Here’s their address,” she said, “but I think they’ve moved. I think they’re in Edmonton now.”
I went to the old address, but the office was empty, but the people working at the business next door confirmed that they had moved to Edmonton and one of the women passed me a phone number. I phoned the Edmonton number from Red Deer and set up and appointment in Edmonton for the very next day and then I drove home to Edmonton.
The next day I met with Gordon Ward, the owner of Canadian Hyperbarics. We hit it off right away. He was an engineer and as he went through his standard explanation of how Hyperbaric Oxygen Therapy worked, I was following all of it…oxygen solubilities…partial pressures…even HBOT chamber design. The therapy was similar to an amine gas sweetening process I often worked with and the very low pressure HBOT chambers were similar to the pressure vessels I designed for my gas plants. I could hardly wait to get Austin started. The therapy turned out to be exactly what I was looking for.
The first couple of weeks of Hyperbaric Oxygen Therapy consisted of daily double dives. Ann or I would enter the small spherical chamber with Austin and we would sit on a well padded and pillowed bench and Gordon would put an oxygen mask over Austin’s head and then Gord would close the chamber plexiglass door and begin pressuring the chamber up with air to about one half an atmosphere or 7 PSIG above normal ambient pressure. The sensations one experienced on pressuring up were quite similar to the feelings one gets in an aeroplane during landings. And when the chamber was depressurized an hour later the feeling was similar to a plane taking off. I would keep yawning to equalize the pressure in my ears, but Ann tended to swallow instead and others would often just chew gum. And in that hour spent in the chamber with Austin we would watch TV through the plexiglass door…sometimes a cat in a hat…sometimes a purple dinosaur…one dive in the morning…one dive in the afternoon.
We detected a difference in Austin in the first week. His night seizures ceased, his hand flapping diminished and he stopped peering out the corners of his eyes. By the second week he doubled his vocabulary to twelve words and he was picking them up while watching the Baby Bumblebee training videos we had bought for him. And he even understood the meanings of the words he was learning!
In the third week we switched to one dive a day and we hired a girlfriend of Ann’s, Sherry, to help with the diving so I could spend more time at work to pay for it all. After a month of dives Austin had doubled his vocabulary to about two dozen words. Driving through the countryside we would point out ‘cows’ and say “cows” and Austin would repeat “cows” and we’d ask “what do cows say?” and Austin would reply “moo.”
We dove with Austin for the next four months and it would seem that for a couple of weeks we would make no progress and then there would follow a week when you could literally watch him improve daily and then a rather flat few weeks were followed by another week of tremendous gains.
Sherry was doing most of the diving now because Ann didn’t like the pressure of the dives very much. We’d pay Sherry by the hour to dive with Austin and it took about four hours and, with the cost of the dives, the driving and hospital parking, it was all adding up. Then Ann began getting in the habit of leaving Austin with Sherry all day and I would end up paying for the extra time, which began to bother me somewhat.
Just before Christmas Sherry bought Austin a pack of Baby Bumblebee flash cards that parents could use to train their children. A picture was on one side of the card and the word for the picture was printed on the back for the parent to read while flashing the picture for the child to identify verbally. We placed a number of cards picture side up on a table for Austin to identify and the rest were fanned out face down next to them. Austin pointed to the pictures and said “train, apple, shoe,” and “three”, correctly identifying the pictures of the upturned cards. We applauded his correct efforts, but we soon stopped, stunned. Austin carried on to the face down cards and began reading the words “truck, orange, spoon” and “flower” on the backs of the face down cards! We were speechless! While Austin was learning to speak while watching the Bumblebee videos he had also taught himself to read!
By Christmas Austin had a vocabulary of over a hundred words, half of which he could also read. And he was only two and a half years old. Not bad considering that six months earlier my wife and the public nurse both said I’d never get him to talk. We put HBOT on hold in January because I had to start up a gas plant I’d designed for Northern Pakistan. I was in the North West Frontier Provinces, near Gurguri in Karak Province, thirty five kilometers from the border of Afghanistan and about seventy kilos from the Keiber Pass. It was a very dangerous place to be bringing in the year of 2005, being next to Al Qaeda country, North Waziristan Province, which was often not so jokingly called ‘Talibanistan’.
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