Denise’s Story

By Guest Blogger Denise Becker

I once heard on the news that everyone would eventually know someone with AIDS, because the disease was spreading so rapidly.  In 1994 it would hit close to home.

I met my future husband in 1990 and three years later, I became pregnant with our first child.  I developed high blood pressure and delivered Katie by C-Section on November 24, 1993.  She was just 3 lbs 14 oz. As any unbiased mother would claim, Katie was adorable!  She giggled and made happy noises but she often missed developmental milestones.  She couldn’t hold her head up and by age six months, she was unable to roll over. I thought it was due to her being a preemie.

And then Katie became sick with pneumonia. She was eventually rushed to ICU at the Children’s Hospital and I was told she might die.  DIE??? I couldn’t believe what they were telling me. I was in tears on the phone with my husband, but when he arrived, she was finally breathing easier. Phew. We could all breathe a sigh of relief.

Katie’s pediatrician then told me she had some personal questions for me.  She asked if I had been around TB. Where had I lived? I replied that I thought she meant the “personal” questions were about “sex.” The doctor then said she thought Katie had AIDS.  I chuckled and told her confidently I would have been tested when I was pregnant.  “No, not necessarily. Were you asked by the doctor?”  “Well, I just assumed it was one of the tests,” I replied.  We looked at each other. “Do you mind if we test for it?”  She smiled, reassuringly.  “No, of course, test for anything” I said, trying to sound calm.  I had always been on the pill and even though I had asked boyfriends, no one wanted to use a condom.  I thought at that moment how weak I had been not to insist.

I went to my right husband’s work place and told him what had transpired, and he laughed at my hypochondriac personality.

When I arrived home that night, the phone rang. It was the hospital.  “When are you next coming in to ICU?” It was a strange question.  “Tomorrow,” I replied.  “We’re just keeping track of people” and the man hung up the phone.  I felt very uncomfortable and started to get a strange jittery feeling in my stomach.

I phoned ICU right back and told them my name and that I was the mother of a child there. “Yes, we know who you are.”  The jittery feeling in my stomach became more intense.  “So why did you ask if I was coming down there?”  There was silence… then… “We’ve had some results…”  My knees began to shake and I thought I would throw up. “Katie’s tested positive for HIV, but it’s not 100% sure.”  My head was swimming, I could barely speak. “How much of a percentage chance the test is right?” I asked.  “Eighty percent.”

I sat on the bed, numb. I heard the TV turn on in the next room– it was my husband.  I don’t know how I managed to walk.  I was white as a sheet and he knew something was terribly wrong.  “They think Katie has AIDS.”

The next day we were given HIV tests. Katie was tested again and we waited a week for the results.  It was a week from hell.  I prayed for a mistake. My husband had been donating blood and I had diarrhea and swollen lymph nodes.

On June 17, 1994, we were told I had HIV, my husband was not infected and Katie had AIDS. I had unknowingly been infected five years earlier by a previous boyfriend. They said Katie might live two years and I could live five years.  The only medication was AZT.

Katie died at home at nine months of age on August 31,1994, two years after Freddie Mercury of Queen, and three years before Princess Diana.  She weighed just 12 lbs.

I was racked with guilt and blamed no one but myself.

We hid the secret from everyone but soon felt we were just adding to the stigma, so I made the decision to go public. I was interviewed on the radio and TV and taught in schools.  My husband never became infected.

New medications arrived in 1996 and if you are found to be HIV+ before or during pregnancy, there is less than a 2% chance you will pass it on to your unborn baby.  Taking the medication properly is the key.

Today, World AIDS specialist, Dr. Julio Montaner, has discovered that by taking the medication and monitoring the virus, you can become “undetectable,” meaning that the virus cannot be found in your body.  They believe the virus becomes hidden, because once a person stops the medication, the virus then reappears.  However, Dr. Montaner believes that this can lead to the stop of the spread of HIV and is advocating everyone to get tested. Together, with condom use and medication, I believe we will see the eradication of HIV if medication becomes affordable in third world countries too. I would like to add that I feel ignorance and complacency are our worst enemies.

And finally, this whole post will be wasted if you don’t take away the crucial message. We’ve all heard we must practice safe sex. That means safe sex and condom use for everyone. That means if you’re newly single or divorced and getting back into the dating world, the pill does NOT protect you from HIV. We must drill it it into our kids and educate them as well. Asking your partner about their sexual past and if they’ve been tested for HIV may seem uncomfortable, but I promise you, the alternative is way worse.

Wishing you good health,

Denise

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Denise Becker is on Twitter www.Twitter.com/HivGirl and is writing a book called “Katie – Her mother’s story.”

Please spread Denise’s message of PREVENTION.

Be safe.

xoxEDxox

Tell us your thoughts, or feel free to write Denise a message right here.

25 Comments
  1. Denise, thank you for sharing your story and being so open and honest. My only hope is for yours and your husband’s health and well being, and for your message to resonate with the world. Sometimes in the heat of the moment, people make poor choices that bring severe consequences. I just hope people truly LISTEN. Thank you again for your story.

  2. Denise I pray for your health. You are so brave. I will spread your message because I think everyone could use the reminder.

    1. Thank you Ginette for you kind words and prayers. I am doing very well, probably the best I have ever been in the whole time I have had HIV.

      Yes, you are right, people can use a reminder. At least we will be getting the World AIDS Conference in Washington in 2012 and that will be a wake up call.

      Thanks for posting. Your comments make me braver.

      Denise

  3. Thanks too to Carla and Erica. Yes poor choices rarely work out and women’s gut instincts are amazing… but the fact that women have such a thirst for knowledge and are readers will stand them well in the long-term.

    1. Hi Rachel: Many medications have side effects and I have had some amazing ones – in particular Steven Johnson Syndrome. About a month ago, I was suffering severely from kidney problems and last week was taken off another medication. I have been put on another with, touch wood, no side effects. Apart from the side effects, PTSD is my biggest problem – blind panic sometimes but my immune system is incredibly good, which I put down to medication, vitamins and a positive attitude.
      Thanks for asking and peaceful thoughts and hugs heading your way.
      Denise

  4. Denise, you are an angel for going public with something that has been so stigmatized. I’m sure you have helped thousands of people and babies in this world! Your story is so sad, but you are an inspiration- keep sharing.

      1. Emily: It is honestly people like you that make me continue. Occasionally, I get a bad comment but such is life and I believe it has made me a better person for going through all of it and not being so judgmental of people.
        Hugs!
        Denise

  5. WOW! What a powerful story. As the mother of a 7 year old girl, I often wonder what life holds for her and will she make the right choices as she grows and matures. I can give her all the tools in the hopes that she will.
    This is one article I will clip and add to my collection that I will give to her to read once she starts her journey to womanhood and hope that this article resonates with her as it does with me.
    Denise, thank you for sharing your story…you have made a difference!

      1. Hi Melissa:
        Thanks for your kind words. I am going to YouTube on Sunday to spread the word and to let women know they are vulnerable to this disease. I hope to post under HIVgirl.
        Your daughter seems to already have a wonderful mother in you, who cares enough to steer her in the right direction and educate her. I think that is all anyone can do if they want their child to have self-esteem and make the right choices in life.
        Congratulations to you for thinking ahead and being informed!
        Hugs coming your way from me…
        Denise Becker

  6. My ex sister-in-law died of AIDs. She was a sweet person who was not promiscuous– she just got engaged to a scoundrel who lived a double life.

    This is a tragic, cautionary story.

    Thank you for sharing.

    1. Thanks for sharing, Dr. Sarah, and I am so sorry to hear about your sister-in-laws’ passing, very sad and I send you warm wishes; your remembrance of her is lovely to read. My contacts in AIDS education have been telling me that unfortunately there are many men living double lives and women of all ages are at risk. The important thing is to get tested and if you do have it get on the medication. Be strong and get tested. Doctors will try to convince you that you are not “high risk” enough for a test but be strong and insist. I know women who were dissuaded from getting a test and found out they had it later.

  7. Oh Denise I am so sorry for your loss. I think you are so brave for sharing this story and you will make a difference to someone somewhere. I have three daughters and this is something I have to educate them on one day soon. I hope you getting your story out there can somehow help you heal and keep the memory of your daughter strong.
    Warmest thoughts to you,
    Patty

  8. Denise,

    Thank you for sharing your story – it takes a lot of courage to open up and talk about things like this. I pray that you and your husband’s well-being and health continues to stay strong. Posting your story will undoubtedly help prevent an extraordinary amount people from contracting HIV. Even though this is a tragic thing that has happened to your family, please know, that you are a hero for sharing your story.

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