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Suzan Stirling

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A Mother's Heartbreaking Story About Pediatric AIDS

Posted: 03/23/2012 3:29 pm

My name is Suzan. I'm an ambassador for the Elizabeth Glaser Pediatric AIDS Foundation, where I advocate for people to join the fight of mothers around the world to protect their children from HIV. I'm also the author of The Silence of Mercy Bleu -- a story about a young woman who grows up harboring the secret of AIDS.

When people ask me what propelled me to write a novel about HIV/AIDS, they're often surprised to learn that I am a 26-year survivor of the disease. But unlike my character, Mercy, who grows up with the disease and later strives to have a healthy baby, I didn't learn the truth until it was almost too late.

I met and married the love of my life in 1988, and a couple of years later we decided to start a family. In 1990, our wish came true and we welcomed a beautiful baby girl into our lives. In those early years, everything was perfect.

But then in 1996, shortly after the birth of our second child, something began to go terribly wrong. In the matter of a few months, both of our children became very sick.

Alee, our then 5 year-old daughter, began to rapidly lose weight. At the same time, our newborn baby, Mitch, had to be put on a respirator in the ICU, where he would spend weeks fighting a respiratory virus his young body couldn't fend off.

The doctors were candid -- things weren't looking good. There were numerous tests and long hospital stays, but still we had no answers. It was a parent's worst nightmare. We were losing both of our children and no one could tell us why.

I'll never forget the phone call that saved my children's lives. It was a new doctor. She was quick to the point. She said, "Something in your son's blood work warrants an AIDS test. I suggest your whole family be tested."

I was in complete shock. I just remember thinking, "I'm going to have to watch my children die." I didn't think I was strong enough to handle that.

We took our HIV tests, and tragically, our doctor was dead on. I tested positive for HIV. So did Alee and Mitch. We were very lucky in that my husband was negative.

Almost overnight, my family became just another face of AIDS.

It wasn't hard to trace where I'd contracted the virus. Before I'd met my husband, I'd been engaged to a young man who I was later told had died of cancer, but who I now believe died of AIDS. I had carried the virus for nearly 10 years without ever knowing it.

My husband and I nearly lost Alee and Mitchell that year, but 1996 -- the year we were diagnosed -- was also the same year that protease inhibitors became available. My husband and I would crush the blue pills into pudding, clap and cheer, and somehow our children would manage to swallow the brown, sticky mess.

Daily, we saw improvements. This new medicine, in combination with two others, literally brought our children back to us. It was and still is the most miraculous thing that I have ever witnessed.

People often ask me how HIV has changed me, and I almost want to say, "How has it not changed me?" To be completely honest, you can't go through what I've been through -- any life-threatening illness really -- and not come out a completely changed person. HIV is even more difficult because it's a disease that many people suffer with in silence, myself included, for many years.

There were so many things that my family and I had to work through to get to where we are today. HIV forced me to be a much braver, more open person, and I'm thankful for that.

It's never easy for me to share my story, but I think it's important for me -- especially as a mother -- to do so. Today, with medicines that drive the virus to undetectable levels, there is now more hope than ever of staying healthy and stopping HIV transmission. This means being able to protect your partner from the virus, and being able to have a child born free of HIV.

My husband and I were fortunate. We didn't lose our children. The same can't be said for families in other parts of the world, like Africa where our youngest son Yonas was born.

Every day around the world, one thousand mothers -- many of them unaware that they carry HIV-transmit the virus to their own babies in utero, during labor, or through breastfeeding. Without access to the right medicines, they are helpless to protect their own health and that of their babies. Being a mother with three children who are all positive, yet remarkably healthy, I can only imagine what that feels like.

The hardest part of my having HIV was never that I might die -- the hardest part was that I had given this terrible disease to my children. No mother should have to carry that burden. Not today, not ever. Especially when mother-to-child transmission of HIV is completely preventable. With preventative services, the chances of a mother passing the virus on to her children are extremely low -- less than 2 percent. Those are some pretty terrific odds.

We can stop mothers and their children from dying. Really, we can. I know because I've seen it with my own eyes, with my own family.

It's been 16 years now since my children's health was restored. I will get to see my children grow up, and I know that for a parent, there's no greater gift.

As an ambassador for the Elizabeth Glaser Pediatric AIDS Foundation, I get the privilege of joining in the fight to eliminate pediatric AIDS. The work done by the Foundation and its partners around the world is saving children's lives and sparing families unimaginable heartache.

The Foundation has made huge strides to help mothers like me, and lifesaving medicines are now reaching more people than ever. You can be a part of that progress.

Join the fight of mothers around the world, and help us get closer to a new generation born free of HIV.

 
My name is Suzan. I'm an ambassador for the Elizabeth Glaser Pediatric AIDS Foundation, where I advocate for people to join the fight of mothers around the world to protect their children from HIV. I'...
My name is Suzan. I'm an ambassador for the Elizabeth Glaser Pediatric AIDS Foundation, where I advocate for people to join the fight of mothers around the world to protect their children from HIV. I'...
 
 
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11:06 PM on 04/03/2012
I love how your marriage became even stronger with the HIV diagnosis- you obviously married just the right man. I also love how you had your own struggles yet adopted little Yonas and saved him from death by AIDS in Africa. If only all with HIV worldwide could be saved. I lost a good friend from college when he died of AIDS in the late 1980's. He was gay and judgemental fools treated him in a crappy manner. I can understand why you kept the HIV a secret for years.
05:27 PM on 03/26/2012
I do apologize I did not catch where it says he was adopted, however medication or not, choosing to have a child after almost losing 2 ,with even a 2% chance is unbelievably irresponsible and you wouldn't be calling me judgemental if your child was infected by one of her kids which is very possible if these children grow up to be irresponsible adults. So I still disagree with you there. However I do apologize to the author as I failed to see he was adopted. I feel terrible for my assumption.
10:59 PM on 04/03/2012
There are tens of millions of people in the USA living with HIV. You have to have intimate contact with someone or else share needles in order to get HIV or else be born to or breast fed by a parent with AIDS. There is no reason to think that even if she did have a third child , he would have been an irresponsible adult but on the other hand, if you have raised your own child to be responsible, he or she will know to protect himself/herself by not sharing needles and using condoms.
06:42 PM on 03/25/2012
Does anyone notice that she had a third child? my heart ached for this woman until that came up. How could she knowingly have another? it's beyond irresponsible just because her kids are okay doesn't mean their lives are restored, they will also have to deal with this disease forever and it will effect everyone they come in contact with romantically. She should've never had a third child willingly. it's just awful.
10:16 AM on 03/26/2012
Pretty sure her youngest is adopted, Ms. Judgmental. Read the story for comprehension. Even if he were not, what business is it of yours? Didn't you see that bit about transmission between mothers and infants being almost entirely preventable with current drug treatment?
02:59 PM on 03/26/2012
Her third child was adopted. It says above that he was born in Africa. Aside from that, even if she did decide to have another child, with appropriate medication and medical care the risk of transmission from mother to child is almost zero. Thanks to testing and treatment (that was barely available in the 1990s when this story was written) the risk of transmitting HIV to children in utero has almost completely been eliminated. Further, just taking medication reduces the risk of HIV transmission to a sexual partner by as much as 96%. Please educate yourself about the issue before passing judgement upon others. It is this kind of ignorance and discrimination that make people living with HIV ashamed to share their status with others.
03:47 PM on 03/25/2012
Such an emotional story. It was sad and inspirational at the same time. You are a strong woman.
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DeniseDuffieldThomas
Coach and Author of Lucky B*tch
10:41 PM on 03/24/2012
Thanks for sharing your story Suzan
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nikki717
War...what is it good for?
10:15 PM on 03/24/2012
I held my breath through the first few paragraphs. I was afarid of what I might read. I am glad this was a happy ending.
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neighborhoodmole
no one really knows who anyone is here
09:18 PM on 03/24/2012
I wonder if the infected fiance who died was a closeted gay man who had proposed to her as a way to conceal his orientation? If so, this straight family is a victim of homophobia. Eliminating the stigma and discrimination of gay men will stop sham marriages and reduce the dishonesty of past sexual history.
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retromoderne
Born right the first time
08:09 PM on 03/24/2012
We do so many routine prenatal tests these days. If HIV isn't one of them, it certainly should be. The outcomes are so different when it's known prior to birth.
10:29 PM on 03/24/2012
It is.
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retromoderne
Born right the first time
11:52 PM on 03/24/2012
thanks. My youngest is 16 so I didn't know.
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GrantS
I'm liberal through and through.
07:55 PM on 03/24/2012
Incredible. I thought that medication only added a decade at most.
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sve
Behave yourselves!
07:26 PM on 03/24/2012
Wonderful story. I hope that the future of medicine has other more wonderful stories in store for us.
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eva belle
Kolob a-calling
06:34 PM on 03/24/2012
I know this story. My little nephew has the virus, born with it, the parents didn't know they were carrying it. Thanks for sharing.
05:55 PM on 03/24/2012
This is a heart rendering story that proves what we do in the moment of heat has consequences far down the road. If her husband and children fogive her for almost killing them, then who am I to pass judgement on this family, go forth and sin no more...God Bless...
07:23 PM on 03/24/2012
She contracted this disease from a previous fiancee. She did not get it from shooting up heroin. Where he contracted it, we will never know. Do not judge her. You are the one who needs to be forgiven.
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Poneez02
The dangerous kind - an informed woman who votes
07:59 PM on 03/24/2012
Amen to that MissMichelle!
08:40 PM on 03/24/2012
Exactly. That poster should ask for forgiveness.
08:39 PM on 03/24/2012
For Pete's sake. Did you read the article? She caught it from her fiance. Who are YOU to talk to her of sin?

It's a greater sin to judge others. "Judge not, lest ye be judged." May you be forgiven for your hardness of heart.
05:25 PM on 03/24/2012
I wonder if the author's husband carries the antibodies that are being hopefully researched.
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mikey09
Living off the grid.
04:51 PM on 03/24/2012
glad for a happy outcome for this family. I wonder, is aids testing now required for all women who are pregnant, if not, it should be.
06:29 PM on 03/24/2012
Actually, it would be better to test everyone, during routine physicals, just like we did with TB in the past. This is a public health issue, and as the author points out, lives would be saved. But because of the social stigma associated with the disease, the CDC and other health organizations haven't pushed the issue.
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neighborhoodmole
no one really knows who anyone is here
09:13 PM on 03/24/2012
Sounds like HIV testing should be part of the premarital blood test in order to get a marriage license! Also, hepatitis and the more traditional VDs. Testing positive should not deny anyone a license, but both parties should have to sign a statement that they understand the diagnosis and the risks of having unprotected sex, as well as the treatment options.