No 'Normal' for Boy Whose Dad Injected Him with HIV
Nov. 19, 2002 -- Although they are the victims, Jennifer Jackson and her son feel like they are the ones in prison.
Known in court papers as "BSJ," Jackson's son is suffering from full-blown AIDS because his father, Brian Stewart, injected him with HIV-tainted blood in 1992 when the boy was 11 months old. Stewart was convicted in December 1998 of first-degree assault for the crime.
Stewart was a phlebotomist — a hospital technician who draws blood — in Columbia, Mo. Prosecutors argued that Stewart, who was never married to Jackson, never wanted to have a child with Jackson and injected BSJ with HIV, thinking that he would die right away and that he would not have to make child support payments. BSJ was not diagnosed with AIDS until 1996.
The trial judge sentenced Stewart to life in prison, telling him, "The most I can give you is life in prison, but I really don't think that's fair compared to what your son will go through. When your son dies, I'm pretty sure he'll go to heaven. But I really think you're going to burn in hell for all eternity."
Today, as Stewart serves his sentence, his son remains in a prison of his own — his body. At age 11, BSJ has already lived longer than his doctors expected. Like any typical 11-year-old, he wants to be active, play sports and do the things that other children his age do. But he cannot.
"I tell my friends this frequently. Though this man [Stewart] is no longer in our lives, we continue to be affected by the things he did when he was in our lives," Jackson told ABCNEWS.com. "Who really got the life sentence here?"
A Blessing and a Burden
Stewart's conviction and life sentence represented a victory for the St. Charles County Prosecutor's Office. However, prosecutor Ross Buehler, who tried the case, says there really were not any winners.
"I've just never seen anyone reach that kind of depravity that you can do this to your own son to get back at your girlfriend," said Buehler. "There is no way to compare the amount of suffering the boy and his parent have gone through and will continue to go through. Mr. Stewart is spending life in prison but he largely got off light. The illness this boy suffers will be with him for the rest of his life and he'll have a hard go at it."
BSJ's disease leaves him too winded and weak to go a full day of school without having to take a nap. He has no relationship with his biological father. His mother says he fights depression and has nightmares about his father getting out of prison and killing their entire family.
At times, Jackson says, it seems like her son's battle with AIDS dictates the lives of her entire household, which also includes BSJ's two sisters.
"I'm two-fold about the whole thing," Jackson said. "I see it as a blessing because I still have my son and the doctors told me he was going to die five years ago. But at the same time, everything in the household — everyone's lives in the household — revolves around his health, his caretaking, making sure he has his meds. … Whether we go out, or whether I choose to do something revolves around his health."
BSJ must take a cocktail of AIDS medication nine times a day through a feeding tube in his abdomen. Sometimes he rebels against taking the medication, Jackson says, because it does not always make him feel well and he complains about the taste, even though the meds are given through a tube.
Besides wishing not to take medication, BSJ, Jackson says, just wants to live a normal life. But that wish is constantly met with frustration. He misses time in school because of his illness. He also suffers from Attention Deficit Disorder caused by brain lesions, which his doctors believe have been caused by his illness.
"He would like to play hockey, but he can't. It would be too physically exhausting for him," Jackson said. "He's gotten to the point where every 10 days he has to take off from school because he becomes so exhausted and he needs an entire day to recuperate. He sleeps a lot … we've arranged it with his school so that he is allowed to take a nap around the middle of the school day every day. But he loses a lot of time because that amounts to one period a day he misses. Between that and the ADD, it's a struggle."
BSJ has also wanted to join the Boy Scouts, but Jackson says the local troop turned him down when she requested that they not disclose his illness to the other scouts and their parents.
"I told them that it would be OK, that if they use universal precautions, he would be alright. If anything, they're more of a risk to him than he is to them," she said. "I told them that if they use the universal precautions, there is really no reason for anyone to know he is HIV-positive. … I know they had a [Supreme Court] ruling where the Boy Scouts could bar homosexuals from joining their organization. Sometimes I think they're equating being HIV-positive with being gay. But I believe that as the Boy Scouts, they should be at the forefront of things."
A spokesman for the Scouts' Greater St. Louis Area Council said he was unaware that the 11-year-old had run into difficulty with the organization, and said the group would be willing to work with the family to help the boy get involved with Scouting.
"I would think that if you get a group of [local] parents together, they'd come to a win-win decision," said Joe Mueller, explaining that the Scouts have no policy barring HIV-infected children, and that local chapters set their own rules for admitting members. "We'd be happy to work with her [Jackson] and her son."
He noted in a subsequent e-mail, however, that the national Scouts' rules do require notification when a member has a deadly, communicable illness. The rule reads: "because of the potential harm to other participants, the existence of the life-threatening communicable disease would have to be disclosed to all of the adult members and in situations involving youth members, to their parents. Unfortunately, any considerations of confidentiality for the afflicted individual are greatly outweighed by the necessity for the other participants to be able to knowingly limit their exposure to the potential harm."
Battling Loneliness … and Stares
BSJ also has had a difficult time finding friends. Jackson says that most of the ostracism happened between the time of Stewart's arrest and his nationally televised trial. Some parents and children, Jackson says, avoided contact with her and BSJ because they were uncertain how he contracted his illness and suspected that she was HIV-positive.
After the trial, Jackson said some members of her community in St. Charles, Mo., did treat her and her family differently. Some recognized her from seeing her face on television and she noticed the stares she and her children received at the supermarket. Today, Jackson protects her son's identity and HIV-positive status. Outside voluntary disclosure, she says most people only know about his illness and the way he contracted if they recognize her face and "put two-and-two together."
However, at times, BSJ still encounters children who don't want any contact with him.
"He has one close friend. He [the friend] does know, and he's OK with it," Jackson said. "He [the friend] feels sad, though, because he realizes that the ultimate outcome of this disease will be death, or at least your lifespan will be shortened because of the illness. He [BSJ] has lost a few friends because of it [his HIV-status], but they were not really friends because true friends stand by you through thick and thin."
‘This is Our Situation’
Jackson says she cannot hold a part-time job because she usually has to be able to drop everything at any given moment to care for her son if he suddenly falls ill. If the visiting nurse calls in sick, or just doesn't show up, she said she usually has to stay up with BSJ to make sure he gets his medication.
The family lives on a fixed income and Jackson said her daughters try to help her care for BSJ when they can. But BSJ's illness has been a strain on them, particularly his older sister who would like to play on a soccer team but cannot because it's too expensive.
"With the older one [sister], we've been dealing with a lot of problems of anger directed towards her brother," Jackson says. "She feels like that everything that goes wrong is based on his illness. She knows that it's not his fault but there's no place to channel that anger."
Jackson says she would love to return to work. However, she is also mindful that she cannot take a job that where she would earn too much money. She does not want to take a job that would make BSJ ineligible for the Medicaid that pays his medical bills, and yet would not pay enough to enable her to meet her family's other costs of living.
Still, Jackson insists that she does not want help or a handout from anyone.
"It's tough. But I feel like this is a situation that I've been dealt, and I deal with it the best way I can," she said. "This is our situation. When you're on a fixed income, it's hard. I worry about the kids' self-esteem. But we manage. Sometimes, one month I'll put off paying the electric bill and pay the gas bill instead. Then another month, I'll put off the telephone bill so I can pay the gas bill."
Living Day-By-Day
Despite his problems, BSJ's doctors consider him a "healthy" AIDS patient. Since he has lived beyond their expectations, they prefer not to make any prognosis on how long he will stay alive.
"They just really approach it as a day-by-day process, especially with all the advancement in medication that prolongs life" Jackson said. "This year, he's been sick quite a bit. It's really been touch and go."
If BSJ dies from AIDS, prosecutors have said a murder case could be pursued against Brian Stewart. However, prosecutor Buehler says he does not want to speculate on whether they would press murder charges.
"I just don't want to go there because the little guy is still alive," said Buehler. "It's negative karma."
Buehler says he was impressed with Jackson's strength as she endured the trial and the media spotlight on her son's case.
"She always handled everything very well," Buehler said. "The regimen of the trial and the media can be pretty grueling, but she handled it the best way she could. She was being the advocate for her son."
Meanwhile, Stewart continues to maintain his innocence, seeking a new trial. His defense argued that his son could have contracted the disease through contact with other known drug users and felons who visited the household when he was an infant. However, the people Stewart's defense named tested negative for HIV.
Jackson and BSJ try not to think about Stewart. But she admits she has bad days. Jackson says she suffers from depression and bi-polar disorder. But her commitment to her son — and the fact that he is still alive and fighting — enables her to cope with their ordeal.
"Oh, I'm not sure [how I manage]," Jackson said. "Through the grace of God, faith that someday there will be a cure or continued advancement in the medication to continue to prolong his life. The fact that I still have my son. I do it because I have to do it."
A trust fund has been set up to help pay BSJ's medical bills. Donations can be sent to:
Thursday's Child TrustAllegiant BankSt. Peters, MO, 63376