 before the tragedy. |
of TheColumnists.com |
By AUDREY YEAGER MOORE
of TheColumnists.com
Terrible things
happen to other people and other people's children--or so we
thought. Yet, in the early spring of 1985, everybody in our family
found themselves bending under the weight of a pain we'd only
heard about, but never experienced. Serious illness had never
come near us. No terrible accident or crippling disease. We were
aware of this blessing, but only on a superficial level. We took
it for granted.
Fifteen months before, we had all been jubilant. One of my daughters had given birth to twin boys, something new to us. We added it to the long list of pluses and celebrated the coming of these identical babies: David and Luke. Whisking photographs from purses and wallets, we bragged of their dark-eyed handsomeness to anyone who would listen.
On that April morning, the twins' day started like any other. Two pair of eyes opened about seven o'clock. Unschooled voices let it be known they were awake and soon their mother was on the run.
Later in the afternoon, David found his teenage sister's purse, reached inside and pulled out a very small bottle of baby oil. Apparently the cap was barely on. A slight cough brought his mother to the scene. She saw the oil container in his hand, the shine around his mouth, and assumed he had swallowed at least a little of the oil. There was no reason to be concerned. Maybe he would have loose bowels for a day or two. No harm would be done. It was only baby oil.
By early evening, David seemed to be having trouble breathing. As a precaution, he was taken to Mary Bridge Children's Hospital in Tacoma, Washington, where the family lived. Doctors found that when David had coughed earlier, he had inhaled the baby oil. It sprayed over his lungs, sealing them off almost completely. Not much oxygen could get in or out.
Moved immediately to Intensive Care, the baby was put under the supervision of the hospital pediatrician. His chest was heaving and straining to get more air. His head was swinging from side to side, eyes wild and terrified. Yes, I was there to witness this frightening sequence of events. Quickly, the doctor ordered medication to put him in a drug-induced coma and worked a ventilator (respirator) down his throat to do the breathing for him. The lungs themselves could do very little. It was a relief to see David in this relaxed state after watching him struggle so frantically.
The family had been called and arrived at the hospital from the surrounding area. We were there. We were concerned, but not frightened, not yet.
David developed lipoid pneumonia, a particularly dangerous type that doesn't respond to treatment for 10 to 15 days. It simply must run its course. This was turning out to be much more than a common case of diarrhea. Still, the term, "life threatening" hadn't entered anyone's mind. The temporary protection of, "It can't happen to us" wrapped around us quite comfortably.
The doctors foresaw a critical period on the second or third day. They believed that would be the lowest point in the illness. When the third day passed with no crises, we were cheerful and so was the staff. Relief was short-lived. The downswing came a day later.
Everything went wrong. David's veins began rejecting needles that had to stay in place. Meanwhile the amount of oxygen he required went from 55 to 80 percent. Pressure used to push the oxygen into the lungs had to be increased, which was discouraging because this pressure could cause a hole to be blown in the lungs. Again, his condition was stabilized. We waited.
Vulnerability shoved its way in among us. We could see it in each other's eyes, while a surface composure kept at bay the thought that David actually might die.
Days crept by. A path was worn from waiting room to cafeteria to chapel. Most of us found our insulation falling off in chunks. While in the cafeteria, a call came from Intensive Care. The parents were instructed to come at once. A hole had blown in one of David's lungs. How can someone live with a hole in a lung? We were medically ignorant. The doctor said they would rather it hadn't happened, but this alone would not kill our little boy.
A tube was surgically inserted into the hole. X-rays and blood samples were taken every couple of hours to determine how much oxygen was in the blood stream to feed the lungs and brain. An allergic reaction to the coma medication became a problem. David's heart-rate went up to about 213 beats a minute as it responded to the trauma and then settled down again as a new medication took hold.
Next came a reaction to the painkiller. His body rejected one medication after another, until there was nothing to give him for his suffering. The artificial coma kept us from seeing David's pain, but we knew it was there. Oh, God! We twisted with emotional anguish as the small body endured. His coloring turned gray and the need for oxygen -- thus, more pressure, went to an all time high.
The
staff worked diligently until there was a shaky control. With
hardly an hour's respite, two more holes blew in the other lung.
The need for oxygen now stood at 100 percent. Eleven days
had passed. The pretense could not be maintained any longer.
David could die.
Doctors were seeing a dilemma develop. Though David's vital signs
were excellent, his lungs were not improving; they were deteriorating.
Meticulously thorough, the hospital people were also compassionate.
Carefully they explained what each part of the treatment was
for. They were doing everything within their sphere of knowledge
and experience. Yet, David, they told us now, was dying.
His parents heard of a machine called ECMO, short for "extra-corporeal membrane oxygenator." ECMO is a modified version of the heart-lung machine first devised as a tool for cardio-vascular surgery. It has proven useful in providing life-support in reversible cardiac and pulmonary failure, which is not responsive to normal medical procedures. Could this be a hope?
The West Coast had no such machine. The head pediatrician inquired of other hospitals across the country and found eight where ECMO was available. One was Cardinal Glennon Children's Hospital in St. Louis, Missouri. They agreed to accept David for treatment after a biopsy proved there was enough healthy lung tissue for possible healing.
None of the doctors would say there was even a measure of hope in the journey. We weren't GIVEN hope; we simply grabbed it and hung on anyway.
Transporting a patient in David's condition is difficult. An ambulance-airplane with doctor and nurse was chartered to fly the baby to Missouri. They arrived at St Louis and were taken to Cardinal Glennon, where David was prepared and placed on ECMO. A lung had collapsed during the flight.
The intricacies of the workings of ECMO are extremely complex. A simple explanation might be this: A cut is made in the jugular vein, a tube inserted, from which the blood travels into and through ECMO, then back into another tube going straight to the heart. This gives the lungs the rest they need for a possible healing. ECMO is not a cure, but an agent to buy time. Because of the potential side effects, the machine is generally not utilized until all other techniques have been tried. Irreparable harm may be done to healthy organs in the body. It is not considered medically wise to leave a child on the apparatus for longer than eight days. But David's lungs needed more time, so he was on ECMO for 282 hours…nearly 12 days. The case has been written-up in medical journals. Yes, he survived, and what a brutal, costly battle it was.
One of the saddest aspects of this tragedy was David's total withdrawal. This is a common occurrence when young children are forced to endure extended pain.
Seven
holes had blown in the lungs. A number of surgeries were done
to remove bits of lung tissue that would not heal. Infection
after infection plagued his emaciated body.
There was a day when live hepatitis germs were found in his blood
from one of the transfusions. Worn out and frustrated, the parents
were told he would almost certainly contract the disease and
that in his weakened state, there was every chance that THIS
would kill him. A day or two later they found dead hepatitis
germs in the blood. No one had an explanation for this seemingly
impossible event. We were having miracles in the midst of horror.
After removal from the machine David was put on a ventilator in Intensive Care. With many setbacks he was eventually thought well enough to take the flight back to the Tacoma Hospital.
Our boy was a celebrity. Local newspapers and TV stations covered the ordeal and the supposed victory. Nurses made posters and taped them to the walls of his room. Helium-filled balloons floated above the bed. The object of the celebration wasn't to enjoy much of the attention. Yet another storm was gathering in his scarred, thin body, probably caused by adding the trauma of the trip to everything else he had been through. The return should have been postponed a little longer.
At 5 o'clock the morning after his arrival, "home," David had a heart-arrest. The doctor worked over him for approximately 25 minutes and he pulled through. Now, however, he wasn't responding as before. Then he wasn't responding at all. He looked out at us with an empty stare and no movement.
A CAT scan of the brain was taken and we went to hear the results. We COULDN'T have been prepared, but sometimes shock is kind, and we sleepwalked through the compassionately given words. During the heart-arrest David had suffered severe brain damage. So severe the prognosis was for a "vegetable" type of existence. No one had an answer to the immense "WHY" that hung in the room.
All that could be medically done for David had been accomplished. His parents took him home, and there were some surprises. Some of his muscles became flexible again. He was up to normal weight and was eating some regular food. He clearly recognized his mother. It wasn't enough. The alarming events weren't over.
The boy began to have seizures. Back he went to the hospital in an attempt to find out what was causing this awful development. Doctors drew a blank. The convulsions continued -- and each one destroyed more brain tissue. They tried sedation…enough, but not too much.
When some sort of balance was found the child came home once more. The seizures occurred regularly and David retreated further away from us.
Was this the end of David's story? Doctors thought so. We, however, knew the brain seems to be the last frontier as far as medical science goes. There is just so much we don't know.
No, we haven't given up hope, only re-labeled it "miracle."
Fourteen years have passed and David is still with us. I wish I could say the miraculous had shined on us and this wonderfully tough boy was healed. I can't.
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(Left) Twin Luke holds David when both were 9; (Center) Luke dressed up for high school prom; (Right) David at same age.
It's been a bumpy path for my daughter and her husband, who know the road to the emergency room too well. They still head that way a few times every year, as those poor lungs threaten pneumonia at the slightest cold. It's also bittersweet to watch Luke, David's identical twin, as he becomes a young man. He's tall, broad-shouldered and as handsome as they get, according to at least one grandma. Strangers wouldn't have been able to tell them apart before the tragedy. Nothing could be easier now.
David's affliction came about by accident. No one person is to blame. On the other hand, his parents felt some attention should be given to what many considered a grave oversight. They asked that all baby oil be labeled, "Warning. Keep out of the reach of children." We agreed the product would never have received such cavalier treatment if that label had been in place. It would have been kept with other dangerous household products. But so-called "pure" baby-oil?
When the company in question refused to comply with the request, David's parents, the Ayers, sued. It was like a stomping boot in the stomach to find the company had known the hazards of aspirating baby oil since the 1940's! My daughter and her husband won the suit -- if you can call it winning. They were awarded $2.5 million, but that now seems like a token amount when it has to sustain David for the rest of his life.
Our family wanted the lawsuit to force manufacturers of baby oil to put a warning label on their products. It took seven years for the company involved to finally do it -- and then they put it on the back of the front label, so customers had to read it THROUGH THE OIL! I'm happy to say that finally has changed and the company's baby oil now carries a strong warning against aspirating or swallowing the product -- and so do the baby oils made by other companies.
This is so ironic to us because all David's parents asked for in the first place was this very label. When the company refused, their anger, frustration and a sense of justice led them to sue.
Most stories have a conclusion, a summation. This one will only pause. Many of us prefer to see David in our mind's eye, laughing, running and tossing his brother a fast ball, rather than the way he is today. If it can't happen while he's here, then maybe it will happen later, when he's in a place free of greed and pain. My grandson may be in a cocoon of helplessness now, but those who love him still can see a butterfly of comprehension in those big, brown eyes, just waiting to fly out.
©2000 by Audrey Yeager. All photographs are © 2000 by Audrey Yeager and the Ayers Family.
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