Alison's Story
NEW PICTURES 8/26/2001!

Let me tell you a story about the effects of our health care system on a real, live American family. That would be my real American family, and while it certainly contains circumstances that are not universally shared, millions of American families have some experiences in common with my own. In 1984, I was working in a fairly high-paid job in California as national franchise manager for a manufacturer of health care equipment. I had just gotten married in October, 1983, and in February we learned that we were expecting our first child. We were ELATED.

HMO's Are OK For Some Things

My employer offered one and only one health insurance plan, an HMO, Kaiser Permanente. It suited my needs to a tee with its low monthly deductions from my paycheck and $2.00 co-pay charge per procedure/prescription. Indeed, it was very much how socialized medicine would work, except their doctors were the absolute dregs of the medical profession, guys educated at the University of Grenada and such, because Kaiser did not pay them fees competitive with the incomes doctors earn in private practice.

This was OK, though, because my wife and I were healthy and seldom needed any kind of medical care. When we needed any services I had to drive to their facilities, which were over 20 miles away in Harbor City, but that didn't really bother me. Twenty miles is nothing when you live and drive in Los Angeles.

When my wife got pregnant, they gave us Lamaze classes and everything we needed, all the checkups, classes, advice, all that we could have asked. They offered us amnioscentesis but my wife refused -- we didn't want to know the sex in advance and she wouldn't have had an abortion even if the baby was grossly deformed -- she is a very strict Catholic.

The Big Day

On September 24 I got a call at work from my wife. Her water had broken and I had to drive her to the hospital. I drove home as fast as a beat up 1972 VW Bus could go (about 60) and took her to the hospital.

The childbirth was a bit tricky, however, but they handled it well. My wife was in labor for fifteen hours even with several dosages of Pitocin. But finally the moment came a little after 10:00 p.m.. I got to be in the waiting room.

Yes, I got to be in the waiting room for the big moment! When Alison was born I saw her first instant of life, and immediately after they cut the umbilical cord they wrapped her in a soft blanket and placed my little girl in my arms.

Her eyes were tightly shut in her little round face, but then she opened them WIDE and looked RIGHT AT ME. The lights were bright fluorescents, and she blinked about six times, maybe once per second, each time opening them WIDE afterwards and looking right into my face with a genuinely and surprisingly focused look. And then she held her eyes open gave her daddy the biggest smile I ever saw, a big, wonderful smile that said, "Hi, daddy! I'm YOUR girl!" I had to hand her back to the doctor then, and he laid her on a table. I was so happy that my mind just discarded what my ears then heard. A nurse said in a furtive voice, "Wait until the PPD (post-partum depression) on THIS one! The doctor replied, thinking I could not hear, "Wait. Don't tell them yet. We're not sure."

But I just passed it off. There couldn't possibly be anything amiss on such a wonderful day, or anything wrong with such a beautiful happy girl with those alert, sparkling eyes and such a specially big smile of love.

They said then that Marie needed to sleep and that I should drive home and get some myself. I was really happy driving home all daddily and everything. I went to sleep thinking how cute she will be in little pink dresses and how I'd get to play the "This little piggy went to market" game with her, and how she'd laugh and laugh.

I woke up the next morning, a beautiful sunny morning, my first morning as a daddy. Shortly after I woke up the phone rang and I thought it would be Marie, but it was a male voice asking for my full real name. I am ALWAYS called by a nickname -- nobody ever uses my full first name unless they're trying to sell me something.

The End of the World As I Knew It

But this wasn't a salesman. He identified himself as my wife's doctor, and I felt a chill and went all pale. He immediately reassured me that Marie was OK, and I asked about Alison. He paused, and said he didn't want to tell me over the phone. He added, "Don't worry. She's breathing alright and everything, but there's a problem." Finally I said, "Look. I live in Hawthorne and I have to drive twenty miles to Harbor City. If you don't tell me now I'll have to drive like a maniac."

So he said, "We think she's Downs Syndrome."

Suddenly the sun went out. All living things on earth died away. All hope was gone forever. There was no light, no life, no God.

I got dressed and went out to the car. Just for good measure, in my excitement the previous night I had forgotten that this was street sweeping morning, and I found a ticket on my windshield for parking on the wrong side of the street. I drove off, and my car was nearly out of gas.

I stopped at a filling station and I looked around for some indication that this might be just a nightmare, a terrible terrible nightmare from which I would soon awaken in a pool of sweat. The gas pump nozzle felt cold and hard. The cars driving by were all of recognizable makes and models. My own beat up car was just as beat up as it ever was. Everything looked so real, but this COULDN'T really be happening.

I got to the hospital and talked to the doctor. I was just crying and my face looked horrible. He asked if I wanted to tell Marie or should he, and I told him I would but to let me try to get cleaned up to put some kind of braver face on this.

It didn't work. All the water in the world couldn't wash away the pain in my face. So I went in to tell Marie, a walk that is probably similar in the thought to that taken by a condemned man as he walks the final few steps down the hallway to the electric chair.

Shifting Fears

I went into Marie's room and she looked at me and said, "What's wrong?" I said a bunch of lines I had rehearsed during my walk to the gallows, but I wasn't the same guy she saw the previous evening and, believe me, I am no poker face even when I play poker.

When I told her, however, she was UNFAZED! This caught me off-guard, because Marie was often rather emotional. I was afraid she would break down or try to blame me for this terrible thing, but to my lasting surprise she seemed almost glad. To this day I will never understand her reaction, but I am grateful for it because it gave me a little strength, as I had none of my own at that moment.

The doctor came in with Alison. He let Marie hold her for a while, and then he left us alone. I looked at her pretty little face (she came in only a little over 5 lbs -- I could hold her in the palm of my hand!) and her little feet, and I played the piggy game with her. Suddenly what seemed a hint of light came from the cold dead sun, and could that have been a bird I saw through the tears in the corner of my eye?

The doctor came and took her away again and the darkness fell once more. He said he'd come back and talk to us in a few minutes. He said he'd detected a heart murmur, and for an instant I had a thought that will forever wrack my heart with guilt and self-loathing. I thought, with a feeling of hope that I now rue, that maybe Alison would die and we could just try again. I believe that may be the single stupidest, horriblest thing that my brain ever thought in my whole life.

They brought Alison back, and again there was light and life in the world. It was only when she was with us that it was OK; whenever she was gone the darkness again ruled the void that had been my mind and heart.

A social worker came in. In retrospect this was humorous. This woman, this "social worker," was the prototype of a priggish schoolmarm, with the sensible shoes and Lily Tomlin Ernestine "We're the phone company, we don't HAVE to care (schnort)" attitude. She told us all the wonderful benefits of giving Alison up. All we had to do was sign and she'd place Alison in a "home" to await adoption. Yeah, all the families looking to adopt want a Downs Syndrome girl, uh huh.

I thanked her and told her we weren't interested. Marie was blunter (which was more appropriate, in retrospect) and told her not to come back, and insisted that I complain to the management, which I did.

We spent the next days in the hospital. They were concerned about Alison's heart murmur and another problem cropped up that was more immediately serious. Her liver wasn't functioning properly and she was getting jaundiced. This is common in Downs Syndrome births, but usually a few hours under ultraviolet lights took care of it. Alison wasn't responding.

After five days her condition continied to deteriorate and they thought she was going to die. They asked us if we wanted to have her last days out of the hospital, and we agreed. We took her in my blessed old VW Bus, which had windows all around so the sun could stream in with its UV rays, and we took her right to the beach. The UV from the sun is much more intense than the hospital's lights, and Alison got better and better and that crisis passed.

Love Conquers All

Little Alison and her dad.We had our little girl home, and she was a GOOD little girl. She was always curious, her bright little eyes following everything that happened. And just like from the start, she was always quick to smile and hold hands and hug. She never made a sound, though. When she was two weeks old we took her to Disneyland. Her eyes were WIDE OPEN the whole time, and on the way home she started babbling and babbling and babbling with her sweet little voice.

And right when the silver linings started to dominate, along came a whole new set of clouds to darken the world.

The doctors wanted to keep close tabs on Alison. Down's Syndrome affects every cell in the body, but it particularly affects the liver and the heart. Curiously enough, the retardation associated with Downs is not a direct symptom but is caused by hormonal imbalances created by different glandular structures. It is well established that, if these could be rectified, Downs individuals would be of roughly normal intelligence.

Alison at about two weeks of age.Alison's first tests were remarkable. She tested normal and high normal in all categories except one, object permanence. In the object permanence test, you give the infant an object that fascinates it. Then you take away the object and put it within reach, but obscured by a cover.

Most children don't perceive that the object is beneath the cover until a couple months old. Before that it's pretty much "out of sight, out of mind." Alison, however, knew right from her first testing at ten days of age. I was really proud of her!

Her liver never again gave us a scare after that first time, but her heart was a different matter. The doctors became concerned that the murmur indicated a bad valve, and ultrasonic examination confirmed this, but their images were so strange that at first they thought there was a problem with the equipment.

Over the next few months they did a number of additional tests using radioactive dyes and found that her circulatory pattern was very odd, and that her circulation, though weak, was providing an excess of oxygen to the cells. They didn't have any idea what might be causing this.

The Gathering Storm

She didn't grow. She got up to 18 lbs. but then her weight began to fall. The doctor called us in told us that they would need to operate soon because this "failure to thrive" was alarming.

But they were nervous. They looked at the tests and thought they had an A/V canal, a common (but severe) Down's-associated malformation of the heart, but the circulatory pattern was all wrong. They had no experience dealing with this, and they implied that I should take Alison somewhere other than Kaiser for the surgery, which would have to be performed within eighteen months, probably twelve.

Now I was in a pickle. My employer only offered Kaiser. Kaiser was willing to do it but had no experience in any pediatric cardiopulmonary problems like this.

I thought long and hard, trying to find some way to keep my job, but this was really a no- brainer. If I had someone inexperienced do this and it went wrong I would be unable ever to look at myself in the mirror again (not that it would have been any great loss except while shaving, but...). So I quit my decent-pay, highly responsible job, moved back home to the Washington area, and took a low-level clerical job with a local government, just so I could get Blue Cross and satisfy their 10-month waiting period for "preexisting conditions."

This way I could use Children's Cardiology Associates at the Children's Hospital National Medical Center in D.C. They had this doctor, Dr. Midgely, who had performed over 800 similar procedures and had a five-year survival rate of over 99%. The only blemish on his otherwise perfect record was a patient who died within the five-year period in an automobile accident. THIS was the man for me!

Darn good thing, too. When they did an exploratory procedure they discovered why Kaiser's ultrasounds were so screwed up. The equipment was working; it was Alison's plumbing that was screwed up. Her valve was just shredded, hardly there at all. She had a canal between both auricles. Her aorta divided in two and went into BOTH auricles. The result of this was that her heart only pumped one-quarter of the blood out to the body with each pass, and the remainder recirculated between the heart and the lungs.

Kaiser would NEVER have been able to deal with this. She'd have died on the operating table.

The Scariest Day of My Life

The day of Alison's surgery loomed. As it grew nearer I began to have very disturbed dreams, one so disturbing two days before her surgery that I was too emotionally drained even to go to work. One of the Sunday morning shows (in fact, it was this show called "Sunday Morning" hosted by John Goldsmith) had this little classical theme music that was played on french horns. Alison loved it, so I made up words about Alison and sang them to her when the song would play on the TV.

Her operation was scheduled for tomorrow, Monday. We strapped Alison in this swiveling chair when she watched TV so she wouldn't fall. When the song came on I would spin her chair around and sing the song. One of the lines I would sing went something like, "And then her dad spins her around, so she can see out on the ground, but instead she gets real mad, because she cannot see her dad," and she would laugh and laugh! On the day before when I sang her the little song I got to that part and just burst into tears, sobbing uncontrollably. I didn't know whether I would ever be able to sing it to her again.

We took her into the hospital and got her there around 9:00 a.m. on the day of her surgery. We stayed with her as much as they would let us, which wasn't enough. Finally the surgery began at about 4:00.

I spent the longest nine hours of my life then. Every now and again the doctor would emerge and tell me that things were going well. After about three epochs of the earth the surgery was finally finished and they took Alison to extensive care and let us see her. That poor little thing. Tubes everywhere, all over her precious little body. She was hooked up to so many machines. This was a REAL challenge.

You see, on the day Alison was born I made her a promise to pick her up every single day. When she had her angioplasty that was rough because she was strapped down in a hospital bed all day long, but I crawled under the bed and picked the whole thing up. But I couldn't pick this bed up; it was a solid metal box of drawers all the way to the floor. But I asked if I could somehow hold her and they said it would be good, so I picked her up. She was all woozy and covered with needles and bandages, but even through all that she looked up at me and smiled just as she had when I first held her so long ago.

That little buzzard beak is one tough buzzard, I'll tell you what. They thought she would be in the hospital for thirty days, but we took her home in only nine. Her recovery was so rapid it shocked everyone including Dr. Midgely. He had warned us that if we saw her lips or fingernails turn blue we should get her to the hospital at once in our own car because she would NEVER survive long enough for an ambulance to arrive.

We lived two blocks from a hospital, so we took the money we had set aside against her funeral, and while she was in the hospital but we knew she had made it I made a down payment on a new Mazda. Consumers Report had said it was the most reliable car of all in 1987, and I wasn't trusting something as important as my little girl to the old Chevette we had been driving (my VW Bus by this time was in Bus Heaven).

Just When You Think the Rain's Letting Up

So, we were driving home from the hospital in our brand new car, the first really NEW car I had ever owned. It had 536 miles on the odometer, all driven between south Arlington and Children's Hospital, and Alison was strapped in a baby seat in the back seat. We stopped at a light on Columbia Pike when, WHAM! we got rear ended by a drunk driving an old Ford Grenada.

Marie and I got out of the car. I went back to get the driver's identification and Marie went into the trunk to get Alison's stroller. Instead of going for his wallet, the driver slammed his car into reverse, backed up about 60 feet, and smashed again into the trunk of my car, hitting my wife and sending her flying onto the sidewalk. He just sat there with his foot floored on the accelerator, spinning his wheels as I watched my brand new Mazda shrink, when I thought, "OH GOD! ALISON'S STILL IN THE BACK SEAT!!!"

I leaped into his window and grabbed for the key. The driver started punching me and finally I got the ignition turned off, but it was an old Ford, see, with this little lever under the ignition switch. I was fumbling for it as he was hitting me, but finally I found it and got the key. I ran to get Alison fearing the worst.

But Alison, well, she was having a great old time, laughing and laughing! For her this was a roller coaster ride. I got her out of the car and ran to Marie.

She could not get up. She was conscious and not bleeding but she was unable to get onto her feet. So we never got home. An ambulance took us to Arlington Hospital, where Marie was diagnosed with a broken coccyx (tailbone) and Alison got as clean a bill of health as they could give her under the circumstances.

The insurance paid for our car and enough extra to get alloy wheels and cruise control on its replacement. We went to see a lawyer, who tried to talk me into feigning injury, but I don't know whatever came of the case because Marie and I had divorced before any settlement was reached.

All's Well... Well, Almost All.

Alison's recovery proceeded apace in a remarkable fashion. She started running everywhere she goes and continues to this day. I have been thinking of taking her back to Dr. Midgeley and asking him if he might just put a LITTLE hole back into her heart to slow her down so maybe her old dad will have a chance to keep up.

So all's well that end's well, or so you might think. Had it ended at this point that might have been the case, but now we come to the part of this rather lengthy story that is actually relevant to politics today and to the inequities in our system of health care distribution that all other civilized nations in the world have already rectified.

I checked the mail. "Oh, a statement from Children's Hospital," I thought. Well, no, not a statement exactly. A bill. See, Blue Cross only pays a PERCENTAGE of the COVERED ITEMS from a hospital stay. The recipient of the services is liable for the remaining percentage of the allowable claims and for the claims that are NOT covered. The total bill for Alison's surgery was almost $600,000. The part left for me to pay was slightly more than $60,000.

SIXTY THOUSAND DOLLARS??? TH-TH-TH-THOUSAND? The dippy clerical job I took in order to obtain Blue Cross, at a MASSIVE cut in pay from what I had been making in California, only paid $18,479 a YEAR.

We checked with local, state and Federal agencies. Had I made $18,461 a year, EIGHTEEN DOLLARS LESS than my salary, I would have qualified for Medicaid and not owed a single cent. As it was I owed the full amount.

We made arrangements for two payments a month, but they left us so penniless that we ate exclusively those little boxes of macaroni and cheese as our sole sustenance. For special dinners we bought genuine Kraft brand instead of generic. And for the most special occasions like our anniversary we would paint the town red with a night out -- at McDonald's.

This went on until the strain of such comprehensive poverty tore apart my little family. I finally got Children's Hospital paid off in 1994, five years after my divorce was final.

Alison on April 11, 2001 So, because my daughter was born with abnormal chromosomes, I will probably never own a house. My family disintegrated. My life was financially ruined for many years. It was not ruined in any way by her handicaps or by her condition -- she is my life's greatest joy -- but it was ruined by the expense of permitting her merely to live.

This would not have happened to us IN ANY OTHER CIVILIZED NATION ON EARTH. Only in America do we hit our sick and injured with the additional burden of poverty. Talk about kicking a guy when he's down!

Republicans, the party of "family values," oppose any enlightened system of medical care distribution in America. But my case is not by any measure unique. MILLIONS OF AMERICANS can tell similar tales of their families' impoverishment because of illness or injury, and the resulting stress tearing the families asunder.

And now there is NO HOPE. A 5-4 Supreme Court decision holding that our votes do not count took all hope away that this might be fixed. Al Gore would have DONE something about this. George W. Bush never will.

Unless I die untimely I will probably live to bury my beautiful daughter. Downs Syndrome people have short lifespans. What happened on December 12 ensured that her increasing infirmities will impoverish me once more.

And some people wonder why I'm angry. I haven't even STARTED on the Republicans' view of the Education for All Handicapped Children Act, through which Alison has been given the great joy of learning to read.

And this is all so Sandra Day O'Connor could retire young. How wonderful for her.

It's Not Just Me

This is all something that has actually happened to me. It's completely true. Some people might think it's just a strange, isolated incident, but there are MUCH worse stories around just as true. While Alison was in intensive care there was a little boy about Alison's age in another bed in the far corner of the ICU where the alarms kept going off at about 30 second intervals. I thought to myself, "Those poor people..." Little did I know!

On the first day I had to sit down for a few minutes. There were no chairs in the unit itself so I went out in the waiting room. Two people we had met in one of the Downs Syndrome support groups -- they owned the house where we usually met -- were sitting there looking very, very tired and past tired. Their son Michael had been one of Alison's little playmates. He was a sweet loving little boy with a very cheerful and playful personality, and Alison really loved him.

It turned out that Michael was the little boy having all the alarms. He had surgery similar to Alison's (although not nearly as difficult), but complications had set in. He was in real trouble. He had already been in the ICU for thirty-four days when Alison got there.

The parents were beyond the "freaking-out" stage and had gone all numb. They had so little to keep them going -- their faces would light up when Michael would go a whole minute without setting off an alarm. It's funny how people's scales of happiness and hope can be so heavily skewed when circumstances require it.

I talked to them a lot. They had already sold their house and moved in with a grandparent. They had no health insurance and the bills were already over $5 million. They had no way to pay an amount like that, but what was their alternative?

On the fourth day Alison was in the ICU little Michael died. His parents collapsed in grief just as if they had been told that their previously healthy son had been struck down by a hit-and-run driver. All through it they KNEW he would be OK.

So they lost their son, but they also lost their home and all of their savings IN ADDITION TO the son that they loved, all because our politicians refuse to serve the interests of the people of America.

When people say, "There but for the grace of God go I," I don't think they mean something as close a shave as the one I and my wife and daughter experienced at that time. When you compare my experience to theirs, mine seems like a bump in the road versus the Rocky Mountains in terms of how difficult it is to pass through the rough terrain.

And there are stories that make Michael's seem minor. And who of us asked for this? How did we deserve this event that threw us into poverty, that robbed us of our homes and families?

The first person who says to me, "Life isn't fair" about this loses teeth. In this respect it is quite fair everywhere EXCEPT in the United States when it comes to the financial effects of sickness and injury. It is ONLY in the United States that our sick and our injured, in addition to losing their health, lose their wealth as well as the price they pay for nothing less basic as a right than their own SURVIVAL. This has GOT to change, and until it does we remain the last nation so callous toward the needs of our neediest people that, despite our technology and wealth, we can only be described as barbarians.

And now, some very recent pictures of Alison, taken in April, 2001, during Spring Break. Click on the thumbnail for a larger, somewhat more satisfying image.

Gallery of Pictures of My Little Buzzlehead

And a NEWLY DISCOVERED TREASURE TROVE pictures from shortly after Alison's birth:

Gallery #2 of Pictures of My VERYy Little Buzzlehead

Author: Ferguson Foont
Last Edited: August 26, 2001
Return to Flatworm Home