Before Janeli Saucedo-Castrejana contracted HIV from her college sweetheart, Jake, the two had planned to break the mold, and be a ‘mixed status’ couple.
Even after they got married in 2010, they used every precaution, but became exceptional in ways they hadn’t planned.
They were among the two percent of couples whose condoms break and Janeli contracted HIV.
Two years later, they became among the five percent of Americans for whom birth control fails, leaving her pregnant.
Approaching her 29th birthday, Janeli is a mother-of-three and lives a very different life from what she expected, and from what most people expect the life of someone HIV positive to be like.
She and her husband, Jake, of San Antonio, Texas both, live with undetectable levels of the disease, are the proud parents of three HIV-negative children and ready to be a new family portrait of what living with HIV looks like.
Janeli Saucedo, 28, is an HIV positive mother of (from left to right) Octavius, five, Maximus, four and Ezri, two
When Janeli met Jake, now 33, at Our Lady of the Lake University in 2007 – four years before PrEP was available – she had heard the rumors about him and his status.
‘It was a tiny school, everyone knew everyone, but I already had this big crush, and I thought ‘you know what, until he tells me something I’m going to go with it,’ Janeli laughs.
The two had been friends for about a year, and when they started dating Jake was a perfect gentleman, never pressuring Janeli into sex, and she wasn’t the type to rush into it either, so their STD statuses just did not come up for a while.
Then on Valentine’s Day (‘of all days,’ Janeli says), Jake cooked her dinner, but it was clear to Janeli that her boyfriend had something weighing heavily on his conscience.
After dinner, he broke down in tears. Distraught, he told her ‘I’m dying.’
When Jake told her that he was HIV positive, Janeli was quick to respond, but she could hardly believe the words coming from her own mouth: ‘You’re not dying, you’re just HIV positive!’
‘It was the strangest out of body experience,’ Janeli says, ‘I was like “who the hell just said that, what are you doing, girlfriend!”‘
But she had, and the attitude she adopted so instantly actually had deep roots that would only grow further.
Janeli says that she is not the face of a person living with HIV that most expect as a Latina who ‘passes’ for white
Janeli contracted HIV from her husband, Jake (right) just months after their 2010 wedding
When Janeli was growing up, her mother had worked in an obstetrician and gyencologist’s office and had taught her the ins and outs of sexual education and STDs starting at age seven, around the time the first widely available HIV treatments were coming out.
‘She told me to be careful, but she was open and honest, guarding me with that knowledge that you can treat these things.
‘I knew people who were positive, and I wasn’t scared of them [because] my parents treated people – whomever they were, wherever they came from – with respect and love and taught me that they are a human.’
Janeli confided in her brother who, as a gay man, she was sure would understand. His advice: ‘Run away, end it right now.’
She considered it, but not for too long. ‘It was too hard to walk away from him – he’s hard to walk away from!’ Janeli says.
Jake is tall, thin, handsome and straight. He’s always been that way, but, like many college students, he went through a rough patch in his early 20s, during which there was a lot of booze, and not a lot of protection during sexual encounters, and he does not know which woman transmitted the virus to him.
‘That’s what happens, people get comfortable with idea that it is going to skip them because they are not gay, or not a drug abuser,’ Janeli says.
‘But the fact is that HIV is a virus and it does not care you who are, who you mess with or who sleep with. It is just a virus, and it will infect any able bodied host.’
For the first several months of their relationship, Janeli and Jake ‘didn’t have much of a sex life, and it was difficult, but we navigated through it all,’ she says.
After Jake proposed to her, Janeli had a moment of clarity, remembering her mother’s answer when, at 16 she’d asked how she would know when she met ‘the one.’
‘She said I would know when I was willing to leave my family for them. And at that moment I was fine with jumping ship and starting a whole new family with Jake,’ Janeli recalls.
Janeli and Jake had their youngest child, Ezri, two years ago. By the time she was pregnant with Ezri, Janeli panicked less, but says the couple is done having children
But Janeli had told her mother, all those years ago ‘my husband will never make me choose,’ and Jake wasn’t about to, assuring her that he’d rather call the whole thing off than see her shunned by her big, close Mexican family.
The family cried for their daughter and the man she loved, sad for him and scared for her, but they threw their support behind the couple.
When they did finally start having sex, Janeli and Jake were diligent about their condom use, even on and after their wedding night in July 2010.
So a few months later, when she got called back to the doctor’s office after a regular STD check up and pap smear, Janeli was all jokes, teasing her new husband that the cute guy at the doctor’s office must just want to see her again.
Janeli does not remember the date of that appointment, or saying much at all when the doctor broke the news that she was HIV positive to her. She couldn’t find words to speak to Jake, who was on the verge of panic.
‘I made it all the way to the car, in shock, and I couldn’t get the door open and I kicked it and screamed and yelled and cried,’ Janeli says.
Friends assumed the couple had expected that Jake would eventually transmit the virus to Janeli, but they had been so careful and equally determined to bust the norm and be a mixed status pair.
Jake apologized over and over as Janeli’s diagnosis sunk in for them both. She could not help her rage, but knew it wasn’t his fault.
One year later, the Food and Drug Administration approved PrEP.
Jake (center) has lived with HIV for more than a decade now, and remains in otherwise perfect health, enabling him to go on outings with his sons, Maximus (left) and Octavius (right)
Janeli was terrified when she got pregnant with her first child in 2012 (left) that the baby would be born with HIV. But she had known since meeting Jake in college (right) that she wanted to have a family with him
WHAT IS PrEP? THE HIV PREVENTION DRUG THAT STOPS 90 PERCENT OF TRANSMISSION
Truvada is the trade name for a certain type of PrEP (‘pre-exposure prophylaxis’) drug which is used to treat and prevent HIV.
This drug in particular is fixed-dose combination of two anti-retroviral drugs, tenofovir and FTC, in one pill.
They work together to interfere with an enzyme which HIV uses to infect new cells, slowing down the virus’s attack or preventing it altogether.
The drug is designed for people that have not yet been exposed to the virus to protect themselves against it.
Alternatively, people who have been exposed can take PEP (post-exposure prophylaxis), a month-long course of drugs started within 72 hours of exposure.
‘It was hard for a while, but this is our life,’ Janeli says, remembering telling Jake ‘we have to accept it and can’t be so sad we got it. You’re living fine and I’m going to live fine.’
And for a couple of years they did, until they found out that, in spite of her birth control, Janeli was pregnant.
‘I panicked. I thought, “there’s no way I can have a baby,”‘ Janeli remembers.
At that point, Janeli and Jake each had been on treatments for HIV for more than two years and had undetectable viral loads.
Women with untreated HIV have a 25 percent chance of passing the virus to their children. But, with treatment, those odds shrink to under two percent – lower, a nurse counseled Janeli, than the risk that a baby will have any one of scores of other birth defects or diseases.
‘I was already in love with the baby,’ Janeli says. Her decision was made.
For the next nine months she had to be on six pills a day to keep her viral load down in a way that was safe for the baby and ‘the side effects plus the pregnancy was torture, but it was also really beautiful,’ she says.
Eighteen months after her first son, Octavius was born in 2013, Janeli and Jake got the best news they could have hoped for: their son had tested negative for HIV.
Five years and two children – Maxiums, four and Ezri, two – later, having three healthy, HIV negative children is the proudest accomplishment of the already accomplished couple’s life together.
‘I take my medications, I make sure they go to their doctor’s appointments,’ Janeli says, ‘I love my husband, but I did that all on my own and no one can tell me I’m not a good mom when I do everything for my kids and they light up my entire life.’
Coping with HIV even helped the couple to prepare for their middle child, Maximus’s autism.
Now, Janeli proudly brings her family to events like the Inclusion Walk fundraiser where they dressed up as gladiators in ‘Maximus’s great army’ for her middle child (right), who is on the autism spectrum
‘We knew how not to deal with it,’ Janeli says, ‘We knew not to blame each other, to let chips fall and put lots of love into it. It’s a lot to process, the last almost nine years of my life from start to finish have been crazy, but so much fun,’ Janeli says.
And when her children start asking about sex and about the medications their parents take, she will explain her condition and all the rest openly, honestly, and can point proudly to the three sets of negative HIV test results she plans to frame.
‘My children are totally healthy and that’s 100 percent my doing.’
Now, Janeli works as the director of development at the San Antonio AIDS Foundation. She decided in the last year that she wanted to come forward with her story as an extension of her work to change perceptions about HIV and the people that live with it.
‘I’m afforded a lot of privilege as a white-passing Latina woman who was in a straight relationship [when I contracted HIV],’ Janeli says. ‘Unfortunately, I know that means that people might listen to me before others.
‘People think that it’s the worst thing that can happen, you get HIV and AIDS, and I’m not going to sugar coat it, it does suck, but it’s not a death sentence,’ she says.
The virus is, however both preventable and manageable.
Her goal now is ‘taking the fear out of testing. People have lived in fear of knowing their status, when they should take it as empowering themselves to take their health and body into their own hands,’ Janeli says.
And whatever the results of those tests, Janeli, her husband and their three children are proof positive that ‘you can live a happy, healthy life,’ she says.
For her part, Janeli is determined that ‘my children are going to live long, and I’m going to be an old, happy lady, not dying of HIV or AIDS.’