Two Opinions on Disclosure

Here are 2 stories written by 2 different families on opposing sides of the disclosure topic.

Written by a family who chooses to disclose their child’s HIV status:

When my husband and I were considering adopting our daughter, who has HIV, one of the first things that we discussed was the issue of disclosure. Whom would we tell? How would we go about telling people? I had volunteered for five summers at a camp for children with/from families dealing with HIV. I had also worked for two years as a case manager at an AIDS service organization. I had witnessed many, many individuals and families who kept the status of their HIV+ family member secret, and I had watched many individuals and families struggle greatly with the stress of doing so. I met children who lived in fear of accidentally “outing” an HIV+ sibling or parent. I met HIV+ children who lived in terror of their friends finding out their secret and abandoning them. I met parents who felt that they had no one to trust and who carried the burden of their and/or their child’s status alone. My husband and I considered these scenarios carefully, both to determine what we wanted for our child but also what we wanted for ourselves. We felt that living with HIV was not just our child’s issue; it would become a family issue, and it would affect the emotional climate of our family.

What we determined was that we did not want our child to live in fear. We did not want her to fear that her friends and the people in her life only loved a part of her and that they would disappear if they knew all of her. We did not want her to live with a huge secret. We did not want her to wonder what people would think if they knew she had HIV. We wanted our child to be secure in the knowledge that the people in her life loved and accepted her, all of her, exactly as she is that no one in her life is afraid of her. In addition, we didn’t want our younger children to feel that our family lived with a secret that might destroy us if it were found out. We did not want our kids to feel responsible for being the gatekeepers of such a secret. We did not want our children, any of them, to feel isolated and alone with the stress of living with HIV. And finally, neither my husband nor I felt comfortable with the idea of perpetuating the stigma of HIV by living as though it was something that needed to be a secret. We are familiar with the argument that HIV isn’t a secret but that it is personal information that shouldn’t be shared. We asked ourselves whether we would disclose that one of our children had cystic fibrosis or diabetes or any other health issue that would affect our children’s lives and emotions. Our answer was yes, we would, because no one blames children for having these illnesses, and everyone expects that the child and family living with these illnesses needs support. We feel that HIV is the same and that it’s the social stigma of HIV that makes it seem different. My husband and I did not want to have to come up with ways of stretching the truth when necessary. We did not want to have to lie if our child were to become ill and need to be hospitalized. We did not want those in our lives to feel betrayed if/when they found out that we had kept this information from them. We had the feeling that, if we told people that our child had HIV, it might be a big deal, but if we didn’t tell people and then they found out, it would most likely be a HUGE deal. We felt that the backlash from keeping such a secret would most likely be far greater than the reaction to an initial disclosure.

Most of our close friends and family members knew that we were sponsoring an HIV+ child. Disclosing to them consisted mainly of telling them that we would be adopting this child and offering the opportunity to discuss their concerns with us. I wrote up an information sheet about HIV, how it is transmitted (and how it is not transmitted), how it is treated, and the likely prognosis for our daughter. I offered this to our friends and family when we told them of our plans to adopt our daughter. No one took the information sheet, and with very, very few exceptions, everyone was extremely supportive. We presented the information in a straightforward manner and with the expectation that our friends and loved ones were already educated about HIV or would be willing to become educated. We did have some family members who were quite opposed to the idea and concerned that we were putting them, their children, ourselves, and our other children at risk. One family member was concerned about how it would affect her children if our child died. We handled people’s concerns by continuing to provide factual information in a calm manner while communicating clearly that our decision was our decision and that we were committed to adopting our daughter with or without their blessing. Although some family members remained opposed to the adoption to the very end, all of them have ended up welcoming our daughter into the family and none of the threats of ceasing contact with our family have materialized.

We had planned to homeschool our daughter, so we felt that the situation would be fairly well controlled. All the families in our homeschool group were aware of our daughter’s status before she came, and all were supportive. In the end, the best choice for our daughter was to go to school. We have been open with both of the schools she has attended, and the the administration and the teachers have been very supportive. We have presented the information in the context of the whole picture of our daughter and how her life experiences have affected her emotional and educational life. Our daughter has chosen not to disclose to her school friends. She has told me that she doesn’t trust her school friends well enough to disclose to them, and we recently had a very anxiety-inducing situation when our daughter was invited to spend the night with a school friend and was very anxious about her friend discovering her medication and asking about it. Although we talked about various ways of handling the situation and the medication was never discovered or commented on, we felt that this situation gave us a glimpse into what life would be like if we had chosen to keep our daughter’s status a secret, and we remain satisfied with our choice to disclose. Our daughter’s opinion is that although she chooses not to disclose to school friends, she is glad that “everyone else” knows that she has HIV and that they “aren’t afraid” of her.

My husband and I both know that disclosure is an issue that will affect different families in different ways, and we respect that different families will handle it differently. As a guest blogger for Positively Orphaned, I welcome the opportunity to share my family’s journey in the hope that it would be of benefit to other families who are considering this issue.

Written by a family who chooses NOT to disclose their child’s HIV status:

I am a very open person, and have been known to share probably more than is necessary throughout my life. In late 2006 my husband and I made a decision that would ultimately challenge and limit my open nature. Our decision was to adopt another child. This time we were adopting an HIV positive child and there was another layer of research and decision making to be done that reached far beyond the experience we had with our first adoption. One of the most important decisions to make was whether or not to disclose our child’s HIV status.

We started the process being fairly open about the fact that we were adopting an HIV positive child. A few friends, some colleagues at work and our immediate family were informed. Our news was always received with support and interest. We live in a very diverse and socially progressive part of the country and most of the people we interact with are well educated and knowledgeable about HIV/AIDS. We felt comfortable talking about it, and did not meet any ignorance within our closest circles.

Things started to change after we brought our daughter home. We learned that she was completely unaware of her own HIV status and really had no understanding of this disease. We began having regrets about our initial rush to disclose. We realized that we, too hastily, had made an important life decision about a small child that we did not even know. We did not feel confident that our disclosing had even had any impact on reducing the stigma. We simply could not find a compelling reason to disclose anymore.

I began doing some research to gather information about how children, whose status had been exposed by their parents while they were young, were faring as teenagers and adults. There was not much data to gather, and the little I did find was not very encouraging. Most of the adoptive families I have connected with during our process have chosen to disclose, but their children are young, just as mine are. I felt that I did not have insights from young adults on how their parents decision to disclose had affected their self image. We decided that we were not willing to take a risk with our daughter’s self image and her trust in us as her parents.

We spent the next many months getting to know her and falling in love with her. She began immersing herself in her new life and in school. In the summer we spent time with our extended family and unfortunately, it turned out that some of the family members who initially were understanding about her status were now treating her differently than they treated our other kids. It was subtle, but our daughter noticed it. I noticed it. It broke my heart. My relatives had a new baby and would not allow our daughter to touch her. The parents guarded over their baby and refused to interact with my daughter. It was shocking to me and once again I regretted ever having disclosed her status. We had spent countless hours educating this family about HIV prior to them meeting her. They even expressed quite a bit of knowledge about the disease themselves. Even with knowledge of the facts about HIV and stigma, the fear still abounds. Seeing the hurt and confused look on her little face that day made me vow to myself that I never again would use my daughter to educate others about HIV. This is not my job. If anyone asks me if my daughter is HIV positive, I answer honestly by saying that she is healthy- because she is.

My daughter is only 7 years old and going through an immense transition right now. Together with our Pediatric Infectious Disease doctor we are still in the early stages of explaining HIV to her. This is our priority right now. Informing those around us of her status is not important. They are not at risk, and I take comfort in knowing that the law is on our side. When she is a teenager and an adult I want her to look back on this time knowing that we focused on building her self confidence and empowering her to make strong decisions about her own life. That we protected her privacy, just as we protected her sibling’s and our own privacy. That we would not let her be known by her status and that the decision to disclose would be fully hers to make. I am not HIV positive and I do not presume to know what it is like to live with this disease. I can only try to guide her to a place where she can find the strength and the courage to be comfortable in her own body- with this disease. When she is mature enough to understand the medical and social aspects of this illness and is able to make an informed opinion about disclosure, it will be with the support of her parents.

We also do not regard our daughters HIV status as a secret, just as we do not regard our other child’s ADD status a secret. This is just private information. Should someone find out about anything private in our family we will certainly use that opportunity to educate. If one of our children tells someone about a sibling’s status, we will use that opportunity to teach our children about respecting other people’s privacy. We will not make a big deal out of it.

I have found that joining the effort to fight HIV stigma without disclosing my child’s status is not difficult. I have been involved in various efforts to remove the HIV immigration ban, I have met with policy makers as well as with HIV positive people in our community. I am in the process of starting a non-profit and with this will continue to do whatever I can to raise HIV awareness and fight discrimination. Perhaps one day my daughter will join me, but I will let it be entirely up to her.

Hydeia Broadbent Interview

I interviewed Hydeia Broadbent and published the post on my old blog in February 2009. It’s not an active link anymore so I’m republishing the interview here with a few extras.


Interview With Hydeia Broadbent

Hydeia ~ Thank you so much for this opportunity to interview you. I admire you and your family so much. Your story is fascinating to me, as this website is all about finding homes, families and sponsorship for children with HIV/AIDS. To my knowledge, you may have been one of the very first babies in the United States born with HIV and adopted. What year were you born? Also, do you or did you know of any others born before you who had HIV and were adopted or fostered?

I was born in 1984 to a woman who was addicted to intravenous drugs. I was left in the hospital and turned over to the state of Nevada.  My family was told I was the first child born with HIV in the state of Nevada.  I don’t know of any children born before me who were adopted. My mother worked together with parents of children born after me to start a daycare center for children infected and affected by HIV/AIDS.

You and your family have been very open about your HIV status since you were first born, which was extremely rare in the 1980s and 1990s. Did you ever feel upset that your parents didn’t give you a ‘choice’ about disclosure?

I feel my parents made the right choice because I’ve seen so many kids my age dealing with depression and trying to cover up lies because they were keeping secrets about why they were at the hospital or why they were taking medicine. Being public showed our family who was loyal and which friends weren’t quite as trustworthy. Take me as I am! Being public made it easier for me as an adult dealing with dating because I never had to sit someone down and have the “ I have AIDS speech.” They already knew what they were getting into…well somewhat!

Things were much different 25 years ago then they are today, and although the stigma is still great, I can’t imagine how it was when you were growing up. Would you mind sharing any stories about how you were treated and how that compares with a child growing up with HIV now?

For me growing up, I really did not face any problems which I can remember. My mother and father dealt with some things, like my kindergarten teacher spraying me with bleach because I sneezed and she mistakenly thought the virus was air born! In another incident, people changed seats on an airplane because I told them I had AIDS after they nosily asked why I was taking medicine.  My mother played it off and said “oh look we have an extra seat – now we can stretch out and get some sleep”. My parents never made a big deal of things when people were acting weird because they did not want me to feel like something was wrong with me.

Do you remember any doctor’s predictions on how long your life expectancy would be? What is your prognosis now?

My prognosis now if fine; I just have to take care of myself and stay on top of my medicine and eat well.  When I was three, the doctors told my parents I would not make it past the age of five! I even coded blue a few times, but after living past what the doctors feared would be my final days, we decided that no one really knows when your time is up until your time is up.

You must have been involved in many clinical and drug trials? How have you handled all the medication over the years? Do you get pill fatigue? Have you been able to take a ‘break’ from meds?
Some people who are infected with HIV/AIDS are able to not take medication for a while without any real health problems but I am not one of them. I tried taking a break a few years ago but my viral load got too high.  When I was younger, taking medicine was something I always did and never knew anything different so I did not complain about taking pills until I got older and wanted a break. Now I would rather take pills everyday instead of being in the hospital and kept from my everyday life.
I understand you have been an AIDS activist since you were very young. Can you tell us about that experience?
I love being an activist and using my voice and life to try and help as many people as I can. I am willing to work with as many people as possible because my story might stop someone from becoming infected. Also if I can help someone who just found out they are infected or a person who may be sick and depressed and feel like giving up, I find it gives hope to people to look at my life and see that I am 25 and no one believed I would be here today!  Over the years I have gone to so many places I cannot name them all, and I have been on all types of television shows and in magazines, but what I love most is speaking to youth and answering questions they have which they do not feel they can ask their parents.

How old were you when you started dating? Can you tell us a bit about the transition of becoming a teenager, an adult and how HIV relates to an already confusing time of adolescence and dating?

I really did not date much when I was a teenager because I was traveling and going to various conferences. I only went to a public high school for my senior year so that kept me from the drama most teens go through at that age. My first boyfriend was when I was about 16 and we dated for about a year and he traveled with me a few times.  I have been with my present boyfriend on and off since 2003. He travels with me when he can and he comes to my doctor appointments with me and picks up my prescriptions for me when I do not feel well or when I am traveling. He is a big part of my everyday life.
Do you think you might have a family some day?
I believe I will give birth to a child in a few years when I own a home and have some more money saved, then maybe a year or two later I would like to adopt a child because so many kids here in America need homes.

Have you ever had any problems receiving medical care including medications? I think some people worry that their adopted children will have comprehensive coverage until they are 18, yet are concerned about health insurance as they become adults.
No I have been okay with receiving health care and getting my medications but I have had close calls before where I was unsure if I was going to be able to get health care. Sometimes it is very scary when wondering where you are going to get health care or help paying for medication, but there are now so many outreach programs and centers that provide help or can point you in the right direction.

Hydeia Broadbent was one of the earliest pediatric HIV patients at a time when only a handful of children had the infection. At the time, AIDS was just being named and HIV, the virus that causes AIDS, had not yet been discovered. To date, about 9,000 children have contracted the virus from their mothers in the United States and more than 2.3 million worldwide. Hydeia is a living testament to the incredible progess that has been made in HIV research and treatment. More information about Hydeia’s life can be found in the mother/daughter memoir You Get Past The Tears (synopsis) and you can also see her on Extreme Home Makeover. She can be reached through  Many thanks to Ms. Broadbent for her time and for her honesty and insight.  I hope that this interview will show the excellent quality of life of people born with HIV and lead some adults to a child with HIV in need of parental care.

Here are the extras:

Lonely Life of a 6 yr Old HIV Orphan in China

China Daily article

Chinese AIDS Orphans
Nicknamed Along, the young boy carries firewood home down a mountain path in Niucheping village of Liuzhou city in Southwest China’s Guangxi Zhuang autonomous region, Nov 3, 2010 [Photo/CFPAlong plays soccer in front of the rundown home where he lives alone. People refuse to play with him due to concerns over his illness. No school or welfare homes will agree to take him. Photo taken on Nov 8, 2010. [Photo/CFP
Child headed household

Along makes a fire to prepare for dinner. His grandmother, who lives 15 minutes’ walk away, built two vegetable plots for him, and pays regular visits despite not living with him. Photo taken on Nov 2, 2010 [Photos/CFP]

A six-year-old HIV-positive child named Along has been collecting wood to support himself since both of his parents died from the virus.

He receives 70 yuan of subsistence allowance per month from the local civil bureau plus periodical material supplies from kindhearted people, but he still lives alone without a guardian.

A follow up article was written 2 weeks later titled ‘No Longer Forgotten’

A Long prepares a meal for himself. The 6-year-old HIV-positive boy lives alone in Niucheping village, Guangxi Zhuang autonomous region. [Photo/China Photo Press

“A Long with his constant companion Old Black. [Photo/Zhou Hua / Xinhua”]

“The boy received toys from people who read about him. [Photo/Zhou Hua/Xinhua”]

“A Long makes a fire to cook. [Photo/China Photo Press”]

Until recently, a 6-year-old HIV-positive boy has lived holed up in a remote mountain village, cut off from humanity with only a dog for company. Chen Feng reports.

A Long is 6. But his world is far removed from his contemporaries. There are no transformer toys, PSP games or friends to play with, only a rough brick structure he calls home and a dog, his constant companion. The HIV-positive boy lives in Niucheping village at the foot of Malu Mountain near Liuzhou, Guangxi Zhuang autonomous region.

His mother died of AIDS in 2009 and his father, racked by a terrible cough and fever, succumbed in the summer.

Dressed in tattered clothes, A Long’s only solace is Lao Hei or Old Black, his dog.

He lives at the end of a muddy path on top of the mountain in his windowless, gray-brick house, with worn wooden doors and rough flooring, permeated by a musty odor.

In contrast, most of the other villagers live in brand new buildings, further down the mountain.

A Long’s parents moved to the top of the mountain six years ago after being diagnosed as HIV- positive.

The boy washes his clothes and cooks his own food at an age when his contemporaries are still being fed by their parents.

Putting some rice and green vegetables into a pot and placing it on a stove made of several blocks of cement, he starts a fire with amazing speed.

He uses no oil or salt but still eats his meal with great relish and sets aside a bit for his dog.

He often sits in the open area in front of his home staring at the path that leads to the outside world, hugging his dog, lost in thought.

He says he has never ventured down the mountain, after his father’s death.

He tells people who visit him – after he came to media attention recently – with great excitement that, “I was in school but only for one term.”

He often takes out his old textbooks, stroking them like little treasures.

Chen Xiyou, headmaster of Malushan Primary School, says: “We allowed A Long to take our pre-school course for one term, but then we had to ask him to leave after his father died of AIDS.

“We have to consider the feelings of the other parents,” Chen says.

A Long is also HIV-positive but has no clue what those letters mean. All he knows is that those who were once his friends have deserted him and doctors refused to help when he accidentally tipped boiling water on his hands.

“But my grandmother always comes to see me,” the boy says.

However, his 84-year-old grandmother will not say why she has not taken him to live with her and his uncles and aunts.

A Long receives a subsidy of 70 yuan ($11.50) from social security and free anti-HIV medicines.

The introverted boy seems overwhelmed with all the attention he has been getting recently.

He is, however, delighted with a basketball that people bought him after reading about him on the Net.

He also practices writing Chinese characters in the sand and is eager to show off his kungfu kicks to visitors.

The latest news is that an old couple has decided to adopt A Long and Old Black, as well as the chicken he is raising.

The local Red Cross Association is also talking about providing proper medical care for A Long.

But there is still one question that troubles the little boy: “When can I go back to school?”

Yu Tianyu contributed to the story.

Adopted Brothers are Pediatric HIV/AIDS Ambassadors

This article is from Elizabeth Glaser Pediatric AIDS Foundation. Lee and Lucas are ambassadors for the foundation.

Children adopted with HIV

My name is Lucas, and I have a brother named Lee. We’re both 11 years old and are living with HIV. We didn’t know we were HIV-positive until one day last summer, when my mom told us why we had to take so much medicine and why we went to the doctor so often.

When I heard of HIV for the first time, I had no idea what it was. My mom showed us books with pictures of the virus and taught us about how it attacks our immune systems. Knowing I was HIV-positive seemed scary at first, but it soon began to make sense. My mom told Lee and me that we got HIV from our biological mothers, who passed it on to us in the womb. It is hard to live with HIV, but I know it will never go away. Now, the only choice is to take all my meds and keep the virus at bay. Some of our meds taste absolutely awful. As bad as it seems to live with HIV, I realize how lucky we are to live in a dedicated family and place where we get good care.
Hopefully someday soon, there will be a cure for HIV. Until then, the most important thing we can do is eliminate pediatric AIDS by preventing the transmission of HIV from moms to their children. We can eliminate it if we raise money, educate people who don’t understand, and help the moms and kids that need it.

I dream of a world free of HIV so no other kids have to become a victim of this virus.

You can order holiday cards designed by Lee and Lucas to benefit the Elizabeth Glaser Pediatric AIDS Foundation.

Help Save an Angel with HIV

This is Olivia, one of the precious little ones I met at an AIDS Orphanage in the spring. She is darling! She is affectionate and loving and talkative and sweet as can be. And she has a family coming for her! I’m so excited that Olivia will know the love of a family and have access to excellent medical care. Her parents have been diligently raising funds and compiling the adoption paperwork and they have just reached a major milestone – submitting the final dossier to Olivia’s country. From their blog:

This sweet little 3 year old is Olivia.  She currently lives in an Eastern Europe orphanage for children who are diagnosed with HIV.  Olivia does not have a future in her native country due to her orphan status and her diagnosis.  At the age of 4 she will be sent off to a “boarding school.”  When she ages out at the age of 16, she will be kicked out and left to fend for herself on the streets. Sadly, many emancipated orphans end up sleeping in the sewers.  She will be jobless and homeless as her HIV and Orphan status will follow her forever.  She has no family to take care of her and no means to pay for the very expensive medications that will keep her alive and healthy.

We are very blessed in our country to have wonderful medical care and medications.  HIV is not a death sentence.  It can easily be managed here in the US.  Olivia can live to old age and have grand children some day.  There is no risk to other children around her at school, sports, or at home.  She can share a cupcake with her brother and he can kiss her when she is feeling sad.  Please look at her picture, can you see her on the streets?  Or can you picture her in a loving family with critters to chase and acres of woods to explore?  She will enrich the lives of those around her and she will help us squash the stigma that HIV still carries to this day.

Our family decided to adopt after we suffered our last pregnancy loss.  We were drawn to the children on Reece’s Rainbow and in particular, the children with HIV.  We fell in love with little Olivia and committed to adopt her.  We have $7k left to raise friends, and we need to ask for help.  Feel free to post our blog link anywhere, or copy and paste our CHIP IN button and put it on your blog.  You can even make a tax deductible donation thru Reece’s Rainbow (

If 200 people donated $35 each, we will have reached our goal.  Please help spread the word. If you can donate at least $20, you will receive a key chain.  If you can donate $35 or more you will receive a tote bag (pictured left).  Thank you for helping to save an angel with HIV!