upset Sara had been, feeling she had been remiss, but neither one of them had noticed a change in the babyâs complexion. Thinking about what had happened next still caused Andrew to break out in a sweat. After a preliminary blood test the doctor had informed them: âThis baby is dying. Get him to the hospital, fast! Your son is a hemophiliac and his condition is critical.â
That immediate crisis had passed, but it had launched a whole new lifestyle for the Taylors, one predicated on preventing Davey suffering even the slightest injury. Simple things would send them rushing to the hospital emergency roomâbumps, bruises, cutting baby teeth, Davey biting his tongue when he fell taking his first steps.
Those had been bitter days and Sara, in particular, had agonized over the situation. Hemophilia was a blood disorder passed from mother to son. Having no brothers or uncles on her maternal side, Sara had been completely ignorant of the fact that she carried the gene. She was burdened with a guilt that could never be overcome. It was her fault that Davey was imperfect. She had immediately planned a campaign to protect her son in every way possible. The babyâs crib and play areas were padded. Expensive special shoes with rubber soles were purchased so Davey wouldnât slip. Occasionally braces were necessary to assure that his limbs grew straight. Each little episode bordered on catastrophe. In addition to dealing with the harrowing medical problems of hemophilia, the Taylors had to live with anxiety and uncertainty every day. And still accidents would occur. Because of Daveyâs young age, his tiny veins sometimes could not accommodate transfusion equipment, and he would have to be strapped to a hospital bed for hours.
Saraâs strength of will kept the family on as even a keel as was possible. She could ease Andrewâs mind and offer hope when there was none, holding out for the day when Davey could be put on an antigen program. Before researchers had succeeded in isolating the two anti-hemophilic factorsâFactor VIII and Factor IXâpatients with bleeding had to lie in bed while bottles of plasma containing clotting factors were dripped into their veins. Then pharmaceutical companies had developed a way to freeze and concentrate the factors, making it possible for patients to self-administer the drug with daily shots. Unfortunately, Davey had developed antibodies against Factor VIII. It took more and more of the concentrate to block his bleeding, and Sara and Andrew feared that he would die from his next injury or spontaneous bleed. So when he was accepted into the antigen program researching suppression of antibodies, his parents were relieved. As long as Davey received an uninterrupted daily dosage of antigen, he would be able to live a normal life.
That word âuninterruptedâ still made Andrew uneasy. In this life of uncertainties, was that really possible? It had to be. At this point, Daveyâs hemophilia was controlled. But, by the very nature of the antigen, it was possible that Daveyâs own body defenses could reject the drug. Then it would be useless, and the only treatment that would be effective would entail hours strapped to transfusion devices. Sara and Andrew had been instructed how vitally important it was that Davey received the antigen at the same time every single day. Even one day without the injection could set up a chemical reaction in his body, whereby the drug would be rejected and rendered useless forever. There would be no turning back. Once a week, Daveyâs antigen level had to be checked; it was imperative that it be kept at a level which coincided with his growth.
Saraâs sister, Lorrie, was a doctor; she realized the problem. So well, in fact, that she had made a decision not to have children, knowing the odds were against her since she, too, carried the hemophiliac gene. Lorrie had happily anticipated getting married and having a
That immediate crisis had passed, but it had launched a whole new lifestyle for the Taylors, one predicated on preventing Davey suffering even the slightest injury. Simple things would send them rushing to the hospital emergency roomâbumps, bruises, cutting baby teeth, Davey biting his tongue when he fell taking his first steps.
Those had been bitter days and Sara, in particular, had agonized over the situation. Hemophilia was a blood disorder passed from mother to son. Having no brothers or uncles on her maternal side, Sara had been completely ignorant of the fact that she carried the gene. She was burdened with a guilt that could never be overcome. It was her fault that Davey was imperfect. She had immediately planned a campaign to protect her son in every way possible. The babyâs crib and play areas were padded. Expensive special shoes with rubber soles were purchased so Davey wouldnât slip. Occasionally braces were necessary to assure that his limbs grew straight. Each little episode bordered on catastrophe. In addition to dealing with the harrowing medical problems of hemophilia, the Taylors had to live with anxiety and uncertainty every day. And still accidents would occur. Because of Daveyâs young age, his tiny veins sometimes could not accommodate transfusion equipment, and he would have to be strapped to a hospital bed for hours.
Saraâs strength of will kept the family on as even a keel as was possible. She could ease Andrewâs mind and offer hope when there was none, holding out for the day when Davey could be put on an antigen program. Before researchers had succeeded in isolating the two anti-hemophilic factorsâFactor VIII and Factor IXâpatients with bleeding had to lie in bed while bottles of plasma containing clotting factors were dripped into their veins. Then pharmaceutical companies had developed a way to freeze and concentrate the factors, making it possible for patients to self-administer the drug with daily shots. Unfortunately, Davey had developed antibodies against Factor VIII. It took more and more of the concentrate to block his bleeding, and Sara and Andrew feared that he would die from his next injury or spontaneous bleed. So when he was accepted into the antigen program researching suppression of antibodies, his parents were relieved. As long as Davey received an uninterrupted daily dosage of antigen, he would be able to live a normal life.
That word âuninterruptedâ still made Andrew uneasy. In this life of uncertainties, was that really possible? It had to be. At this point, Daveyâs hemophilia was controlled. But, by the very nature of the antigen, it was possible that Daveyâs own body defenses could reject the drug. Then it would be useless, and the only treatment that would be effective would entail hours strapped to transfusion devices. Sara and Andrew had been instructed how vitally important it was that Davey received the antigen at the same time every single day. Even one day without the injection could set up a chemical reaction in his body, whereby the drug would be rejected and rendered useless forever. There would be no turning back. Once a week, Daveyâs antigen level had to be checked; it was imperative that it be kept at a level which coincided with his growth.
Saraâs sister, Lorrie, was a doctor; she realized the problem. So well, in fact, that she had made a decision not to have children, knowing the odds were against her since she, too, carried the hemophiliac gene. Lorrie had happily anticipated getting married and having a
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