This article was originally published by the Los Angeles Newspaper Group
By Melissa Heckscher, Wednesday, August 16, 2006
Two-year-old Grace McKittrick knows how to play the drums with her hands and paint pictures with her fingers. She’ll show you where her secret hiding spot is at her favorite playground and how she can swing from the jungle gym with only one hand.
What she doesn’t know – not yet, anyway – is that her dad is HIV positive.
“Sooner or later she’s going to have questions, like, ‘Why does Daddy take pills every day?’ ” said Shelley McKittrick, 46, who along with her husband, Al, 55, adopted Grace in 2003. “You can tell her the truth until you turn blue, but until they’re a certain age they’re not going to hear it.”
To Al, the challenge of telling his chocolate-skinned, fiery-eyed little girl that he’s HIV positive, that all those pills are there because “Daddy is sick,” is a hurdle he never thought he’d face. In all honesty, said the blond-haired former Broadway music director, he thought he’d be dead by now.
“When Shelley first asked me about having kids, I was like, ‘Are you out of your mind?’ ” said Al, who contracted the virus in 1993 from his then 24-year-old girlfriend, Dee Dee. “I told her, ‘I’m going to die. What are you talking about children for?’ ”
Dee Dee died three years after she was diagnosed and Al had expected he would follow her a few years later.
“That’s what everybody did,” he said. “Nobody was beating those odds.”
But he did.
He met Shelley in 1997. She was HIV negative, a social worker in the AIDS community, and she wasn’t deterred by his status. They were married 16 months later.
“One of the reasons to treat your HIV is to live out your dreams. For us, it was being a parent and having a child,” said Shelley, who lives with Al and Grace in a quiet Torrance, Calif., neighborhood. She is still HIV negative and gets tested every six months.
“Ours is a message of hope to people with HIV: You can have dreams. You can have children.”
But it isn’t easy.
To be clear, Al is HIV positive; he doesn’t have AIDS. An AIDS diagnosis means either the immune system has suffered a measurable loss of cells or that the HIV-infected person already has developed an AIDS-related infection such as pneumonia or tuberculosis.
But AIDS isn’t the death sentence it was 20 years ago. Modern medications have made the disease a treatable (though still incurable) condition. Though it used to be that a person diagnosed with HIV could expect to develop AIDS within 10 years and die one or two years after that, these days people with access to good medical care can live relatively normal lives, indefinitely.
“There is no reason to think that HIV is what’s going to be the end of Al’s life at all,” said Shelley, who works as a community liaison for Gilead Sciences, a pharmaceutical company that manufactures, among other things, the two-pill-a-day treatment regime Al follows. “Al’s disease has not progressed. In fact it has regressed since he was on meds.”
According to HIV InSite, a Web site devoted to disseminating HIV and AIDS information, deaths among people with HIV are now more often the result of health problems such as injuries and heart attacks than of AIDS.
“HIV is a very different disease than it was in 1995 when it was considered a terminal disease or a gay disease or an intravenous-drug user disease,” said Dr. Mark Sauer, an endocrinologist at the Center for Women’s Reproductive Care at Columbia University, one of the few facilities helping HIV-positive couples get pregnant through advanced in-vitro procedures.
“There are a million men, women and children (in the United States) who are HIV positive,” he said. “These men and women live very well, disease free, for a very long time. How are you going to keep them from wanting to have children?”
The answer: You aren’t.
STRUGGLE TO ADOPT
Faced with the stigma of a disease still linked with homosexuality and intravenous-drug use, many HIV-positive couples face discrimination and disapproval in their quest to start a family.
But the desire to be a parent is a strong one. According to a national HIV Cost and Services Utilization study of 2,864 HIV-positive adults receiving medical care, having HIV “dampens but does not come close to eliminating” their desire to have children.
“Many people who have been infected are assessing their lives and what they want to do with their lives,” said David Kennedy, a Santa Monica, Calif.,-based anthropologist studying the emotional effects of HIV disclosure on children with positive parents. “For some, being a parent is an essential thing.”
Shelley and Al McKittrick chose adoption after deciding they didn’t want to take the risk of sex without condoms and after donor insemination failed.
Adoption can be a long and tedious process for any couple; for someone with HIV, it can be especially difficult.
“There are adoption agencies who absolutely discriminate,” said Carrie Lucas, an attorney with the Center for Rights of parents with Disabilities in Colorado.
The Americans with Disabilities Act makes it illegal for U.S. adoption agencies to discriminate against people with HIV.
Lucas has muscular dystrophy and has adopted two children. She said any disability can make being approved for adoption more difficult, but if the disability is HIV or AIDS, it might be even more problematic.
“AIDS is not assumed to be a random disease; it’s assumed somebody did something wrong,” she said. “Do you need to disclose that you have high blood pressure? Diabetes?”
No, but by law, adoption agencies are obligated to look at each prospective family on a case-by-case basis, she said. An adoption agency can reject an application only if a disability makes the person unfit to be a parent.
“There is no disability across the board that would allow an adoption agency to not consider a parent for adoption,” Lucas said. “It depends on how the disability affects them and how it affects their ability to parent.”
But not all HIV-positive parents face resistance when trying to adopt.
At the Independent Adoption Center of Los Angeles – a 25-year-old open adoption agency that handles about 200 placements a year – branch director Marcy Tajkef said she’s seen HIV-positive clients adopt children through her agency.
“(HIV) hasn’t hindered our clients from matching with birth moms,” Tajkef said. “It really hasn’t.”
International adoption is a different story. Foreign agencies aren’t required to follow U.S. anti-discrimination laws, and some countries, including Lithuania and the Ukraine, don’t allow prospective parents with HIV to adopt.
“International adoption was one of the first times we ran into the question, ‘Are you HIV positive?’ ” said Shelley McKittrick, who was living with Al in Boulder, Colo., when they started the adoption process.
“Everybody wants to know if you’re well, if you’re going to be alive to raise your kid,” she said. “That’s valid. But to have an additional piece of paper that says you have to go get an HIV test and a TB test before they will even look at you is discrimination in a whole other way.”
Realizing they may not be approved to adopt a foreign baby, the McKittricks turned to the Boulder foster-care system and were rejected.
“When Boulder told us they weren’t going to accept us, we were filled with despair that it wasn’t going to happen,” Shelley said. “We knew that if we managed to become parents it would be an act of grace.”
And it was. Just as they were about to give up on the adoption process, a social worker called to tell them she knew of a pregnant woman looking for adoptive parents.
Grace’s birth mother, Keisha, was a young woman Shelley called, “the product of child sexual abuse, parental addiction and incarceration.”
“The best decision Keisha ever made was to find an adoptive family for her daughter,” Shelley said. “She wants nothing more than for Grace to thrive.”
If the McKittricks hadn’t adopted Grace, she likely would have entered the foster-care system, Shelley said.
“They would have taken Grace at the hospital, period, end of story,” she said.
The McKittricks got Keisha into private care, rented her an apartment, and were there the moment Grace Monet McKittrick came into the world.
“Al was holding her hand trying not to look while I watched her come out and cut her cord,” Shelley said. “We took her home from the hospital the next day.”
Keisha currently is in a Colorado jail for parole violation on a minor drug possession charge, Shelley said. Nonetheless, Shelley and Al intend for Grace to someday meet her birth mother.
HAVING BIOLOGICAL CHILDREN
For some HIV-positive couples, adoption isn’t an option, either because it’s too expensive or because they simply want their own biological children.
But having biological children when one or both parents has HIV is a tricky endeavor, being unprotected sex could infect the negative partner and the unborn child.
In general, an untreated pregnant woman with HIV has about a 25 percent chance of transmitting the virus to her baby. With treatment, that risk can be reduced to less than 2 percent.
“That’s still one out of 50 babies,” said Dr. Robert Brzyski, chairman of the Ethics Committee of the American Society for Reproductive Medicine. “At the same time, if someone is a carrier for cystic fibrosis and they have a one in four chance of having an infected child, some couples will choose to have a child and some doctors will choose to help them.”
In 2004, the ethics committee issued guidelines to fertility doctors treating HIV patients, saying doctors have the same obligation to treat HIV-positive patients as they would any other patient suffering from any other chronic illness.
“The bottom line is that HIV should not be looked at as a unique situation,” Brzyski said. “There are other individuals and couples that have life-threatening illnesses, or illnesses that might be transmitted to their children. The same sorts of evaluations and decisions should be made across the board.”
When it comes to pregnant women with HIV, there is no debate: They must be treated.
According to the Centers for Disease Control, proper perinatal care has decreased the number of babies born with AIDS in the U.S. from 122 in 2000 to 48 in 2004.
“When I first started this, there were a lot of doctors who thought [treating HIV-positive pregnant women] was a bad thing to do because it encourages them to get pregnant,” said Dr. Alice Stek, director of the maternal, child and adolescent HIV program at the Los Angeles County-USC Medical Center, the largest perinatal AIDS program in the state.
“But these women are going to get pregnant if they want to, and at least this way they’ll have the proper information.”
Stek said about half of her HIV-positive patients choose to get pregnant.
“The risk is so low that I think most of the patients are not that concerned about it,” Stek said. “In the medical community there is this moral idea that these women should not be considering pregnancy and many people are surprised that they are.”
Couples in which the woman is negative and her partner is positive can conceive using advanced sperm-washing techniques. Sperm “washing” involves separating the sperm from the semen before insemination. (Sperm is not thought to be a carrier for HIV.)
The procedure is illegal in California and other states where laws prevent HIV-positive men from donating sperm.
“The risk to the patient is very remote,” said Columbia University’s Sauer, who has delivered 120 babies, all of them HIV negative. “I’d like to say zero but I don’t think you can say that.”
Sauer lessens the risk further by isolating a single sperm for insemination.
“When a 40-year-old woman decides to conceive, she’s going to take on a 2 percent risk of birth defect or of having a stillborn,” he said. “People don’t consider her unethical. This is less risky than that.”
RAISING A CHILD
Even if the baby is born healthy, there is still debate over whether an HIV-positive parent will live long enough to raise his or her child to adulthood.
Are there any guarantees? Doctors aren’t sure, being effective medicines haven’t been around long enough to tell.
“I’ve seen many of my patients who are doing very well and they’re excellent parents and they’re seeing their kids grow up,” Stek said. “They’re still healthy many years later … but we expect eventually everybody is going to get sick.
“Then again, HIV-negative people can develop things, too.”
There is some concern that an HIV-positive parent could inadvertently transmit the virus to his or her children, but without intimate contact (via blood or semen), transmission is virtually impossible.
“If you take the premise of there’s an earthquake and the house collapses and Grace and I are both badly wounded and bleeding, because I’m in treatment and undetectable, the chance that I’d transfer HIV to Grace is still almost impossible,” Al McKittrick said. “Even with that, do Shelley and I have unprotected sex? No, because no percentage is worth it.”
Shelley and Al said the family’s mixed-race status probably will be more of an issue for Grace growing up than Al’s HIV.
“You can look at it from the loss side. … Or you can look at it from, ‘What might she be as a result of this experience?’ ” Shelley said. “What might she be as a result of a multiracial, open adoption. I mean, there are so many issues in our lives that are much more than HIV.”
HAVING A PARENT WITH HIV
For a peek into how having a parent with HIV might some day affect Grace – the McKittricks learn from Breauna Dickson, 17, a close family friend.
Dickson lost her father, David Dickson, to AIDS when she was 5. David’s partner, Kevan Willison, who is HIV-negative, became Dickson’s guardian and a few years later found a new partner, Gregg Cassin.
Cassin has AIDS, but has been healthy for more than 20 years.
“I matured really fast when my dad died,” said Dickson, a petite 12th-grader with long dark hair and deep blue eyes. “When I found out that Greg was positive, it was more like, ‘OK, I have to be strong for the both of them.’ ”
Dickson, who lives in San Francisco, has spoken about HIV and AIDS at fundraisers and school events since she was 11.
“I don’t define who I am with how many people I’ve lost or how many things that I’ve gone through,” she said. “It was a tragedy at such a young age, but there was something amazing that came out of it because I got this family where I had to face the fear of, ‘I could be hurt again by this. I could have another parent die.’ ”
She said she considers Cassin and Willison just like “regular dads.”
“They came to my soccer games, they came to the play I was in when I was in elementary school,” she said. “It was a family that wasn’t worried about, ‘Is this my last day?’ We were just a family that wanted to be together.”
When asked whether HIV positive couples should be able to have children, Dickson said, “Absolutely.”
“It is absolutely necessary for HIV-positive couples to have kids because that’s what they deserve,” she said. “They’ve lived through something and it’s no different than a cancer survivor: You’ve survived it. And you should have everything you want.”
For now, the McKittricks say Grace will learn about Al’s HIV naturally. Little by little.
She already knows what an AIDS ribbon looks like – Shelley has one tattooed on her ankle, beside a tattoo of a teardrop.
“It’s an AIDS ribbon crying,” Grace will proclaim when she sees it. “The AIDS ribbon is crying. The AIDS ribbon is sad.”
© 2008 The Los Angeles Newspaper Group