The Bubble Boy Part II
11/05/1984 at 01:00 AM EST
In September 1971 a Texas baby, identified only as David, was born in Houston with a rare disorder: severe combined immunodeficiency (SCID). This left him with no defense against germs and bacteria. Because his older brother, also named David, had died of the same affliction a year before at seven months, doctors decided from the moment of the new boy's birth to isolate him in a sterile plastic bubble. Their hope was that, in time, David might develop his own immune system or that a cure would be found for SCID, a condition that afflicts 200 U.S. babies annually. In the following pages David's mother, Carol Ann (the family withholds its surname), tells of raising her son in his sterile world and of his brave fight, which ended last February when he was 12.
We lived with the hope that some treatment or cure would be discovered to allow David to leave his bubble and lead a normal life. The possibility of that happening was a sustaining force for all of us, including my husband, David, and our daughter, Katherine, and David's attitude was heartening. He always felt that when, not if, he got out, everything would be all right. He never talked about nor getting out. The emotional strain of his confinement was real and we shaped our lives around it, but I honestly never felt sorry for myself. How could I dare feel any less hopeful than my son? If I had let down for even a moment, David would have known it. He had a rare sensitivity toward people. It was an almost mystic gift.
From the time he was small, David talked about the kind of life he wanted when he left the bubble. Once, seeing his uncle sweeping the front porch, he called out, "When I get out of this bubble, I'm going to help do that." At other times he talked about being a fireman. I remember telling him jokingly that as a Catholic mother, I wanted him to go to Notre Dame and become a priest. Knowing something of the dedication and deprivation of the priesthood, he laughingly told me, "You can forget that."
In spite of his isolation David seemed to go through all the normal stages other children did. There was a period when he got very sassy with me, and when he did, he got the same treatment other children get when they talk back—a spanking. I grew up believing in corporal punishment and decided I should not make an exception in his case. I would simply put my hands through the gloves in the side of the bubble, grab him and give him a few swats—that is, if I could catch him before he scooted to the other side of his playroom where he stayed until everything cooled off.
David also went through a tantrum stage. Outburts were understandable because it bothered him that he had so little control over his life. Someone would have to turn on the TV set for him, or change the channel or turn off the light. He was independent minded and later improvised ways to help himself. Reaching into the gloves on the side of the bubble, he would manipulate a stick about five feet long to turn lights on and off and open and shut doors.
When his temper flared he would pound his playroom floor or slam something against the Plexiglas walls. He was not so much self-pitying as a frustrated perfectionist. He was especially that way with his schoolwork. He didn't have erasers on his pencils until third grade, when NASA developed a process to sterilize the rubber. David wanted his school papers to look perfect. Without an eraser he had to scratch out mistakes and the untidiness of the paper would lead him to wad it up, throw it away and start over. When these kinds of things got to him, he would shout at anyone nearby.
Most of the time he was extremely polite, but I have to admit he was spoiled. He would ask somebody to change the TV channel and if it wasn't done promptly, he could really yell. After a while we used David's attraction to TV as a control mechanism. I had sought help from a child-behavior expert who advised us to let the television become our "switch." Since TV had become one of his few pleasures, denying him access to it when he misbehaved soon brought him around.
I have always been proud that my daughter, Katherine, who was nearly four years older than David, was so close to him. She never treated him as handicapped, instead dealing with him like most older sisters do younger brothers—on a brat level. She would sometimes call him a brat, and his favorite word of disparagement for her was "dummy." During the nine years that she slept beside his bubble, I could hear them at night discussing school or the day's events. To my dismay, they also talked about the meaning of off-color words, which they picked up on cable TV programs.
Their occasional brother-sister confrontations were healthy. When they had a fight, it didn't last long. It couldn't—with David in the bubble and Katherine on the outside. One time I remember David bopped Katherine when she was perched on a chair near the bubble. He reached into one of the gloves and just socked her. It knocked her off the chair and infuriated her, but there could be no retaliation because he could scamper out of her reach.
Katherine did have her ways of getting revenge. Whenever they argued over which TV program to watch, she would threaten to unplug the power supply that kept David's bubble inflated. If he insisted on having his way, she'd unplug the system and watch smugly as the bubble started deflating. There was really no danger because he could move into another area and seal it off, and Katherine would only keep the plug out a few seconds. He would scream at her indignantly before admitting defeat with a plea to "plug me back in."
Katherine was very protective of David. If she saw a stranger staring at him anytime we had him in the yard in his transport bubble, a small bubble on a wheeled platform, she would maneuver herself between the stranger and her brother. She didn't want David to feel as though he were a curiosity.
We included him to the fullest extent possible in everything from decorating the Christmas tree to baking cookies. Once we were making petits fours for a St. Patrick's Day party and naturally were using green food coloring. The children started arguing over which one should put the cap back on the bottle. One of them dropped the bottle and it spilled on my beige carpet. It had been a grueling day, and that was the last straw. I became enraged and began cleaning up the mess. The harder I scrubbed the more the dye smeared and the angrier I got. David darted into the far corner of his playroom, and Katherine quickly disappeared into her room. I yelled at David to "Come here!" But he refused. I hurried to Katherine's room because I knew I could reach her. But I stopped before I touched her. How could I punish her and not David, since they were both at fault? I sat down and cried. For years they would smirk about this and recall "the day Mother flipped out."
David saw a lot of movies on our Betamax, but once, when he was 11, he actually had a chance to "go to the movies." His best friend was Shawn Murphy, who lived nearby. Shawn knew how much David loved all the Star Wars pictures, and he asked the local theater manager to try to arrange a special showing of Return of the Jedi. It took three weeks to work out, but we took David in his transport bubble and got to the empty theater about 9 a.m. David was almost as impressed with the vastness of the theater as he was with the picture. Anytime during the screening that I tried to ask him any question, he would shush me with "Not now, Mother, not now."
As David approached his 10th birthday, I hoped he could make his First Communion. I discussed it with Father Laurence Connelly, our parish priest. It was decided how it would be done: The unconsecrated host would be placed in a container, irradiated at the hospital and then placed inside the bubble. Father Connelly would celebrate Mass in our home and the host would be consecrated, and David would then receive communion.
I picked up the required books for First Communion candidates and showed them to David. He was discouraged by all that had to be read and said that they wouldn't be necessary, that he knew all there was to know. "Mom, I know God made me and I know He loves me."
The day he received communion our families were with us to celebrate. David folded his hands when necessary and bowed his head on cue. That was such a happy day for me. I never got to see him as an altar boy, but I did see him make his First Communion.
During the school term, when he studied at home but was linked to public school classrooms by speakerphone, David always had a great deal of company because other children in the neighborhood would drop by. But during summer vacations he would stare out the window, looking at the others playing. I always hated that, and one summer I had the idea of employing a tutor to teach him some arts and crafts. He turned the idea down. "Summer is for vacations," he said flatly.
Shawn, of course, boosted David's spirits. Though he was four years older than David, they got along well. Shawn is a Mr. Fixit, and David loved to watch Shawn tinker with broken machinery—a hair dryer, TV set or record player—that he would work on in our house in David's presence. They would discuss the operating principles of the item and then go to work on it. David helped as best he could.
The two boys spent hours together playing games, reading, talking and watching TV. Not long ago Shawn told me that some of the mysterious telephone calls received by our neighbors—the "laugher" and the "heavy breather"—were actually David's creation. That seems in character with his lively sense of humor. He kept rubber bands in his bubble and loved to catch one of us in a doze as we watched TV near the bubble. He would shoot the rubber band against the plastic near our faces. The loud, slapping noise jolted us and amused David no end.
Both he and his father were football fans, rooting especially for the Houston Oilers. They hardly ever missed watching a game together, and David delighted in keeping an "extra" score—the number of times his father swore when the Oilers missed key plays. Oiler fullback Earl Campbell once said he would like to visit David. On the afternoon that Earl came by the house, David peppered him with questions. Earl called him "Buddy," and they slapped hands through the plastic. David loved it.
There was no one dramatic moment when David learned that he had an immune deficiency. I'm sure it was more of an evolving understanding for him, with much of the awareness coming during his frequent stays in the hospital. He was told, however, that his older brother had died of the same disorder.
About a year and a half ago I noticed that David seemed to be growing more pensive. This showed in his expressive eyes. He became more secretive and really wouldn't share his thoughts with anyone. He might try to evade our probings with a joke, but if we were too persistent he would issue an outright rebuff. He began watching too much television and pored over schoolbooks and the National Geographic.
The night in 1982 when we decorated the Christmas tree, David made an unusual request. He wanted us to move his transport bubble onto the front walk. He said he just wanted to see the stars for a while. It was a chilly night and required a sweater. We all sat quietly and watched the stars in silence for about 20 minutes. Then we took him back inside.
There had been some real changes in his life. He was approaching puberty and his old pal, Shawn, was at the age when he was discovering other things, including girls. That naturally cut into the time he spent with David. Katherine had her own busy life as a teenager with increasing school and social activities. David was only 11 but he was wise beyond his years. We all ached to be able to do something for him, but there was really nothing more anyone could do.
It was about that time when we learned that the bone marrow transplant procedure for combating David's disease had improved greatly since it had been used unsuccessfully on his older brother in 1970. The so-called unmatched-donor system, with sophisticated new techniques, could utilize marrow from a donor who was a close but not necessarily a perfect match. Medical scientists could then cleanse the marrow and infuse it into the bloodstream of somebody like David to stimulate the growth of an immune system. Our doctors told us that the operation was proving very successful, and that it was 99 percent safe. They said it would either work or not work. But if it didn't work, we would simply be back to square one.
So in the summer of 1983 my husband and I sat down with Katherine and David to talk it over. We told him everything that we knew and added that nothing would be done without his permission. David had a lot of questions and wanted to know who the donor would be. None of us had yet been tested, but we did say that Katherine might be the logical one, based on past tests for our first son.
We also told David that there was no danger to him and that we couldn't wait to hold him tightly, without a wall of plastic between us, and to kiss him. David just looked at all of us with those large dark eyes and finally said, "Okay," adding quickly, "but I don't think it's going to work."
The donor tests were done, and Katherine did prove to be the closest match. When we got the news, I started crying and hugging them both as best I could. At last David asked, "Why are you crying?" I looked at him and said, "Because I will finally get to hold both of you."
David entered Texas Children's Hospital last fall, and Katherine and I flew to Boston, where her bone marrow was drawn and treated by a specialist. Within a few hours, on October 21, David received the transplant. Since his doctors had to remain outside the bubble, David had to help perform the 30-minute operation, assisting the doctors in inserting the needles into a vein in his arms to carry the marrow into his own circulatory system.
Then the waiting began. Weeks passed, and the doctors still could not tell if the technique was working. David continued his normal routine, though under close surveillance, at the hospital. He carried on with his lessons. We were hopeful and excited, but as time wore on we began to get twinges of apprehension.
The doctors hadn't expected the procedure to work immediately, but many of them thought something should have happened long before it finally did. As Christmas approached, we begged to take David home for his favorite holiday. He had always helped decorate the tree, reaching through the gloves and testing the lights before we would string them. Then he would decorate the lower branches that he could reach. The doctors agreed to let him come home and told me to take his temperature and watch for a rash that might signal a dangerous reaction to the marrow transplant.
We had a good Christmas. David wanted to give Katherine something special for being his donor, and I selected a lovely sapphire-and-diamond ring for him. I told him there was a matching bracelet that he could give her for her birthday in April.
On New Year's Day David routinely checked his temperature and found it to be about 99.5°F. He felt well so I thought maybe the thermometer was faulty. The next day, when the nurses came to transport him back to the hospital, he mentioned it to them and nobody seemed too alarmed.
Within a few days he grew very ill. For the next several weeks his temperature would go up to as high as 105°F but would be brought down with medication. He couldn't keep his food down and would sometimes suffer raging diarrhea. Since he was only 4'11" tall, doctors began worrying about dehydration. They thought he might need blood and glucose transfusions to re-hydrate him. And they said that couldn't be done in the bubble.
Old and terrible memories began to flood back. David's quarters in the research center were the same as those that had been used by his brother. Now that David was growing increasingly ill, the normal hospital clatterings and odors reminded me of his brother's death, and a sense of foreboding would occasionally overwhelm me.
Finally, the doctors said David would have to come out of the bubble. Our family had been on an emotional roller coaster for weeks. One day David would seem fine. The next he would be shivering, or vomiting and have diarrhea. He might be cheerful or just sit on the floor and rock back and forth. (He did this when he was younger but psychiatrists dismissed it as natural. They said it was his way of proving that he still had control over his body.)
The doctors admitted they didn't know what was happening to David. We didn't know if it was more dangerous to continue treatment inside the bubble, where he was ill from some unknown reason, or to take him out, where we knew from past experience that terrible dangers awaited him.
My husband finally asked David what he wanted to do. "Daddy, I will agree to anything to feel better," he said. In effect, he made up his own mind. The hospital prepared a special "clean room" for David like the one I had used just before he was born. It was scrubbed five times from floor to ceiling and kept locked until he arrived.
Last February 7 my husband gave the final approval, calling me at home where I was resting after a long vigil at the hospital. David was not to be moved out of the bubble until I got there. As Katherine and I raced those 40 miles downtown, I cried all the way in fear that something dreadful would happen.
While we were in a nearby room changing into sterile clothes in order to enter David's isolation room, Dr. William Shearer was with my son, carefully taking the cap off the bubble. David, weak with fever, hesitated at the opening. He must have been reacting to the rule that had been drummed into him all his life: He was not supposed to go outside. Finally Dr. Shearer reached in and took his hand, guiding my exhausted child gently out from the bubble. He was covered with sterile sheets and quickly taken to the room prepared for him. We all put on sterile hospital gowns, shoe covers, caps, masks and surgical gloves and then were admitted into his room. We rushed to him and, having waited so long, the family began touching him and caressing him. He was smiling and tickled by all the strange touching. "Stop it!" he yelled. "Quit it! Stop it!" We broke into laughter thinking about what we were doing. Without the muffling effect of the plastic barrier, his voice was softer and clearer than I had ever heard it.
Even though David was groggy, he seemed fascinated by the different view of things outside the bubble, and he ran his fingertips over the furniture and lifesaving equipment. His condition began to worsen almost immediately. He began to vomit blood, and the fevers raged with less and less time between attacks. Some member of the family, nearly unrecognizable in all the sterile garb, stayed in the room with him nearly all the time.
When I could, I loved to sit beside him and run my gloved fingers through his jet-black hair. He was trying to keep my spirits up as he talked optimistically about when he would go home. He maintained his sense of humor. When a nurse tried unsuccessfully to draw blood from one of his arms that was by then full of collapsed veins, he looked at her, smiled, and said, "You don't suppose the well has run dry, do you?"
He protected his dignity and privacy, as much as that is possible in a hospital. When Father Connelly asked him how it felt to be out of the bubble at last, David fell silent before answering politely but firmly: "Isn't that a very personal question?" A moment later he softened his abrupt reply with a sincere, "By the way, how's the bishop?"
The hospital brought in its most experienced people and sophisticated equipment from the intensive-care unit. Still David worsened. With such limited knowledge about these transplants, the experts had to treat the unknown. Fluid began building up around his heart and lungs, causing an additional strain on his tiny body. There were tubes running all over him.
He had been cooperating with the doctors and trying to keep our spirits up too. But he also said quietly, "This is not working." He knew the end was coming. One night I told him how good and warm he looked in bed and how I wished I could crawl in there with him and cuddle him. He said, with a smile, "Someday you will." I found out later that his father had said almost the exact thing to him the next day and had gotten the same answer. Another night a dream awakened him. "Mother," he said, "I had a vision. I could see all four of us in the den watching TV." I thought it was strange that he would use the word "vision." In his feverish state did he call a dream by another name, or was he trying to comfort me?
On February 22, the night he died, his close friend, psychologist Mary Murphy, had been with him during one of his lucid moments, holding his hand. When she was leaving, David said, "Remember, I love you, Mary. Goodbye." He had never said goodbye to Mary. It was always, "I'll see you later."
He became weaker, and more complications set in. He was often in a coma. All his life he had tried to keep us from being gloomy. Even now, he smiled when he could. I kept telling him that I loved him, and that his daddy and sister loved him. I remember thinking I couldn't live without him, that if he died, I would too. But I didn't feel that way at the end.
I think he did something to me. I don't know what. In some ways I could never understand my little boy—his courage, and how he took it all so gracefully all those years. If he had the courage to die as he did, how could I not have the courage to go on living?
Once as I was telling him I loved him he drifted off for a moment. Then he blinked his eyes slowly, those dark, dark eyes and said, "I love you all too."
That was the last thing David said to me.
Dr. Shearer had given us the shattering news the night before—"I think he will die." Now, as Dr. Shearer examined him, David looked up, smiled and said that he knew the doctor and medical staff had been without much sleep for several days. David said he knew he was getting the best care. But he also knew nothing was working.
He told the doctor, "I'm tired. Why don't we just pull all the tubes out and let me go home?" By "home" I think he meant to say he knew he was dying, and a better place awaited him. Then he winked at the doctor.
The tubes were taken out, as he had asked. He had been free of the bubble for 15 days. He was placed on a respirator to ease his breathing. Dr. Shearer gave him a sedative to ease his last hours.
He became unconscious. I continued to tell him that I loved him, that we all loved him. I was crying, but to myself, afraid that might be the last thing he would hear.
After he was given the last rites, I asked the doctor if I could remove my surgical gloves and touch my son. I could now, I was told. It was the first time, ever, that I touched his hand. I lifted my mask. I kissed him. It was the first time, and the last time.
We all stepped outside, and a few minutes later, at five minutes until 8 in the evening, the doctor came into the room and told us David had died.
David had never cried during his life. That night, the doctors, nurses, all of us, cried for him.