This article is from the Daily Press (Newport News, Virginia), October 26, 1975. Go here to view the article.
“Eric: He Lives With Hemophilia” by Tina Jeffrey
A seven-year-old dreams of neighborhood football games and rough-housing with his friends, but Eric Howell’s dreams must be less rambunctious. One of 25,000 serious hemophiliacs in the United States, his smallest bump can cause a bleed. Still, despite his limitations, Eric is growing and progressing as a normal seven-year-old—just a little more quietly.
Mr. and Mrs. Arthur J. Howell of Newport News worried because their baby boy, Eric, seemed to bruise easily. The pediatrician tried to reassure the parents and said it might be because the child was very fair skinned. But Nancy Howell kept asking why, and the doctor tested the infant for anemia. The report was negative. Finally at nine months, Eric underwent comprehensive tests. The verdict stunned both parents: Eric has hemophilia, a deficiency of a blood-clotting agent.
Although the disease is transmitted from mother to child, as far as Mrs. Howell knows, there has never been a case of hemophilia in her family. Doctors say it’s possible there could have been a mutation in her genes, producing the X chromosome which caused hemophilia in Eric.
The next few years were harrowing. Like more than 60 percent of this country’s hemophiliacs, Eric was treated by doctors who had no other hemophilia patients. Not until much later did his parents learn there is a National Hemophilia Foundation, and that there is a large hemophilia center little more than an hour’s drive away at the Medical College of Virginia in Richmond, where specialists in the disease conduct monthly clinics.
Meanwhile, they raced to hospital emergency rooms time after time when Eric had a bleed, and “it was not unusual to run up a bill of $100 a visit,” says Mrs. Howell. Once, the child was put in a straitjacket while an inexperienced doctor jabbed him repeatedly, trying to find the baby’s vein.
The Howells learned mostly by trial and error how to recognize when Eric is bleeding internally, and what to do for him to lessen the hurt. Blood seeping into a joint will cause pain, so at the first sign of Eric limping or favoring an elbow or ankle, they immobilize him to keep the joint straight. If it fills with blood and swells in a bent position, painful traction or plaster casts are necessary to straighten out the little limb.The smallest thing can trigger a bleed. One Christmas the young man was gnawing on a plastic toy when the sharp edge punctured a place in his gum. He was in the hospital for 11 days afterward, and medical personnel sought to stop the bleeding, and the bill ran to $2300.
Conversely, the seven-year-old is now in the process of losing baby teeth—and the other day pulled a tooth with no bleeding at all. In 1974, the Howells began taking the child to the Richmond hemophilia center. The revolutionary new treatment of injecting Factor VIII cryoprecipitate into his veins to combat a bleeding session, somehow, did not seem to help the little boy, and his doctor began to suspect that perhaps his own body was causing a problem. Two years ago, MCV doctors discovered that Eric’s antibodies, the substances which normally fight dangerous infections, were working against the blood product, much as the body rejects a new heart in a transplant operation. When the cryoprecipitate was placed in Eric’s blood to promote clotting, the body defenses rejected it.
So, the new weapon in the fight against hemophilia is powerless to help Eric, at least for the time being. The hope for the future is that the present antibody action against Factor VIII and Factor IX will weaken and permit his system to accept the much-needed treatment in dire emergency.
“I guess I’m overprotective with Eric,” his mother declares, “but I can’t not be, because one more serious episode might mean the end. If he could take the cryogenic it would be different, but he doesn’t have that protection.”
Jay Howell has major medical insurance at his job at Newport News Shipbuilding, and it has been a help with Eric’s bills. Her Blue Cross helps some too. But still, it’s not enough.
The emotional load on Eric’s parents is something else. The only way they can endure the trauma of Eric’s hemophilia is with strong faith in God’s will, and by living one day at a time.
There are good days and bad days, sighs Nancy Howell. They can pretty well count on Eric suffering a bleed at least once a month — sometimes once a week, depending on how hard he plays. He doesn’t have to be bumped to bleed; it can be spontaneous from over-excitement. That means they can generally expect trouble around holidays, like Halloween, Thanksgiving, Christmas, Easter, etc.
“We try to stay cheerful,” says Jay Howell, “and not dwell on the bad times. It is a strain, though.”
“It really gets to you when your child is crying with pain and there’s nothing you can really do,” adds Nancy Howell. “We know that the bleeds into his joints eventually will cripple him.”
Meanwhile Eric is growing and progressing in mind and body at Palmer Elementary School, where he is a second grader. He has a wheelchair at school he can use if necessary.
Mrs. Howell works part-time for the law firm of Drucker and Diamonstein. She was instrumental in calling to Del. Alan Diamonstein’s attention the financial plight of hemophilia parents and Diamonstein was successful in getting a state law passed giving some state aid to hemophiliacs. She used to work more hours than she does now, but her longtime baby-sitter moved away and she feels she cannot ask someone else to babysit a hemophiliac child. She serves on the board of trustees of the United Virginia chapter of the National Hemophilia Foundation, composed of parents and friends of hemophiliacs, who are observing this month as Hemophilia Month in Virginia.
