Thursday, January 25, 2007

Happy Birthday My Maren!

Today Maren turned 5! When we got him he was supposed to be about 3 1/2- we quickly felt that he was at least 4- but were shocked when the dentist said he was between 5 and 7. The pediatrician said he was 6 and the endocronologist said he was 7. We felt a bit of a loss- because you think you have this 3 year old and suddenly you are having to contemplate kindergarten. We felt like we suddenly lost years right before our eyes. So we decided to age him up. He turned 4 in November on the day my grandfather would have been 100 years old if he was still here. And today is his Ethiopian Birth certificate DOB- which is also his Uncle and Godfather's birthday...in April we will turn him 6. That is the date we learned that he was legally ours.

We had a great little birthday and here are some photos of the event.

We had just gone to our friends birthday party and they are from Mexco where a child takes a bite of the cake for each year they are old. Of Course Maren wanted to do this too!


Maren never had pajamas in Ethiopia, never owned shoes, he says "My clothes were dirty", when he got these PJ's for christmas he just LOVED them. He actually brought them in to show his teacher one day!


His big sisters just love him...

Wednesday, January 10, 2007

HIV and adoption FAQ

Do you have any references, books, websites, etc. that you would recommend people read in order to learn more about HIV?

I am going to answer this in a separate post. I won't make you wait. Its just that it's a list and I am afraid people won't read the rest of the questions below if I post it now.


What is the prognosis for kids who are HIV+ in the world today? I have read in several places that HIV is now considered a chronic and manageable disease. Is this true in most cases?

Children living with HIV in parts of the world with easy access to good health care, ant HIV medications (AKA Antiretroviral medications, ARVs, and HAART or Highly Active Antiretoviral Therapy) have an excellent prognosis. Since HAART began in 1996 we have seen a rapid decline in the number of people with AIDS in many parts of the world. It has increased the number of people living with HIV. This is because without HAART HIV will progress to AIDS. There is a window of 7-10 years (sometimes shorter and in some people that window is very long) in which your HIV stays well controlled without medication. Once your immune system hits that tipping point so to speak- and the number special helper immune T Cells (CD4 cells) declines so low that your body becomes susceptible to numerous infections it once could fight off easily (opportunistic infections) you have progressed to full blown AIDS. Many many people who started this therapy 11 years ago are alive today and doing well with their HIV so well controlled it is not even detectable in their blood. This means their immune system functions almost like people without HIV. It means they can go to school, college, get married and have babies- and they are doing all of these things and more. Many of you, if asked, would say you do not know anyone with HIV, but the reality is that many of you do and you just don't know it. We care for many kids in Colorado, Wyoming, South Dakota, New Mexico, Arizona, Utah and Kentucky! They are all in schools with kids like your kids and you would never know what they are walking around with. But, you don't really need to know, unless it's someone you are close to and you can offer help with childcare when they travel to see the HIV clinic every three months.



What are some of the common medical complications that HIV+ children have to endure?


Kids without treatment can have a variety of Opportunistic Infections which include but are not limited to Shingles (or herpes Zoster) Condyloma (or warts), fungal infections like thrush, yeast infections, fungal infections in their brains like Coccidiomycosis, Chronic Bacterial infections like ear infections, pneumonias, meningitis and other brain infections, cryptosporidium syndromes that involve chronic diarrhea, and cause wasting are common. Chicken pox that can be life threatening, rashes, poor growth, issues with brain development, Cerebral Palsy, heart disease, diseases that are worse in other parts of the world like TB, Typhoid and Malaria.
Click here for more on this and a guide to HIV

BUT with meds we see some side effects to the meds like pancreatitis, Hepatitis (liver abnormalities) Kidney disease, and even kids who are well controlled will still get Zoster (shingles) sometimes. Other side effects to the meds include elevated triglycerides and Cholesterol- so having a good diet is very important. Most of the issues kids who are on meds deal with are related to the meds and not related to the HIV. Unless you count the stigma of living with a disease that so many people are still so ignorant and fearful of. That is often described by families as the worst side effect of having HIV. Not the HIV, Not the meds, Not the visits to the doctor every there months, but the STIGMA of the disease.

Do you have any advice for adoptive parents who are considering adopting a child who is HIV+?

I think you want to talk about it with people around you whom you reply on for support. Expect them to voice concern, and even expect them to be angry with you for making a choice that will affect them. And listen to them..and when they are quiet tell them you would love to answer all of their questions...if they have none - ask for them. Say "I know you are probably concerned that our child might come home and be very sick and then die." (Its good t ask this one for them first- its not the first thing in their mind- but it will make them feel better that you assume this is their first concern.) You can then relay what we do for kids with HIV today and how kids born with this 25 and 30 years ago are in medical school, college getting married and having children who are uninfected.

Our rate of transmission in our country for women who are well controlled on medication is an amazing and miraculous less than 1%!!! then you can ask "for them" the question that they really want to ask which is "I am sure you are wondering if we are putting ourselves and those around us at risk?" (again you couch this as their concern for you- you don't mention them- it feels much less like an attack this way) and you can explain the transmission of HIV and how impossible it is to get from regular contact. After you have discussed this with those you love and have gained some support you will feel better about moving forward. Seek out the providers you are likely to use for their care and talk to them educate yourself, talk to other families who are affected by HIV, not just adoptive families but speak to moms who are living with this disease and raising children with and without HIV.

Then find one of the few courageous and innovative, the few truly caring, those on the leading edge of adoption, the frontier- contact those agencies who will facilitate and adoption of an HIV positive child. And every agency that does write them a latter thanking them for reaching out to those kids who needed it more than any others. And thank them for the families willing to bring home a child with HIV. Then choose the agency that works best for you and your family, raise money, and adopt just like you would any other child. (Except there is one more step in this process which I can cover on a different post)


How can I locate an Infectious Disease specialist or an HIV specialist in my area?


The Internet is a great tool for this. The Ryan White Care Act is a great resource with listings all over. Calling a children's hospital that is near where you are and asking them what they provide and what they recommend for children with HIV, seeking out an IMPAACT site (formally known as the PACTG) because these sites are federally funded and have access to treatment trials that other sites do not. Checking the IDSA webiste. Find a clinic that is multidisciplinary. You will want a social worker or case manager- its helpful if there is a nurse practitioner who works with the physician and we have a dietician, neurodevelopmental psychologist, social worker, NP, MD, Pharmacist, child life specialist and a general pediatrician. We are blessed in our clinic to have all of these people committed to the families we care for.

One of the biggest worries I have is not about the medical aspects of HIV, because I think we can handle those (as parents you deal with what you have to in that regard, there are no guarantees of health with biological children either), but I am worried about the social aspects of HIV. It is still a disease that carries such a negative social stigma how can parents become prepared to deal with these social issues? Who do you tell? Who do you not tell? How do you deal with discrimination against HIV+ children?

This question is why this post sat here unpublished for so long because if I really had this answer we would not even be having this discussion. I am going to answer this one in a separate post too. Because I feel it’s so important, and I want to answer it well.


Do HIV+ children pose a risk to other children in their homes, schools, churches, etc.?

None. (read that period aloud) There is no known documented case of a child passing HIV to another child in school or church. There is one famous case in England with two boys who both had Hemophilia and one had HIV and the other did not- they do not know how the other got it but the theory was the shared a razor- even this would pose a low risk unless the razor cut the skin of both kids caused a lot of bleeding (remember they had hemophilia) and they used the razor immediately after each other. And today- with HAART when the viral load is less than detectable the risk of transmission is almost nothing- it's why a baby can be born through a bloody birth canal- be covered in blood and not get HIV. HIV is very hard to get. Its not a strong virus in that it only lives a very short amount of time in air...dies within seconds in air. Unlike Hep B, which is, a sturdier virus and can live a long time in a needle in the right conditions for instance. HIV is not easy to get. We don't talk about that all the time...but its hard to get under normal circumstances- things that make it easier to get are unprotected sex with someone who has other sexually transmitted diseases- or if you have other sexually transmitted diseases. Studies are showing that concurrent drug use with things like METH makes it not only easier to get HIV, but may be helping HIV progress to AIDS much faster than in a healthy non-substance using person.


My friend is a nurse and I couldn't believe her response to my comment that we might consider an HIV+ child. At first she asked me why we would put our family at risk. How can we educate ourselves about HIV and the risks...and then how can we
educate our friends and families to understand the issues?


I am always amazed at the health care professionals who are for some reason more afraid than the layperson. I have pediatricians who tell a mother their child has AIDS because the HIV antibody that comes back on a newborn is positive. That test only looks for mom's antibody- so its only a test of a mother- can you imagine how devastating that would be to be told that in error?

I will be posting some great websites to help educate yourself. I think the best is listening to people who live with the disease talk for themselves Click here to view the Positive Project by Tony Miles. I know this man and this is an amazing project where you can hear and see the stories told first hand.

I think when people ask how you get HIV- many times they are asking how do we NOT get HIV. Here is how you DO NOT get HIV:

"Studies of families of HIV-infected people have shown clearly that HIV is not spread through casual contact such as the sharing of food utensils, towels and bedding, swimming pools, telephones, or toilet seats. HIV is not spread by biting insects such as mosquitoes or bedbugs." This comes directly from our governement's Infectious Disease agency (NIAID).



Should people share that they are adopting an HIV child or keep as a need to know basis?


This is obviously just my opinion. This will depend a lot on whom you are and your community. I feel that you should not announce it to everyone because there are privacy laws for a reason. They are there to protect your child form discrimination. I have three types of families- I have the ones who are so open, give talks, the whole school knows, the child becomes the poster child for HIV in their area...Then I have families who only disclose to people close to them. the kids identify a few best friends whom they grow to trust and they tell, only the school nurse and principal knows or they have not told the school at all (most of my patients do not disclose to the school), then their are families who tell no one. and I mean no one- including the child with HIV. 12 and 13 year old walking around with HIV who do not know.

None of these scenarios are perfect. But I can tell you those kids who have the most trouble are often the first and third group. Kids don’t mind being the poster child when they are you, and families often benefit- they can make money to pay bills, raise awareness, put a face to the disease- so much of that is so important to decreasing stigma as a whole and so for that I have to applaud these families who attempt to normalize and educate others. But- in most cases those kids become teenagers who do not want everyone to know they are HIV +. they want to be "normal". They want to move and start over. They are tired of being treated differently. They stop taking meds in order to make themselves feel normal. And In smaller communities this can really take a toll on a child-there are also community members who burn out from the constant attention to the cause.

You have to find what works for your family. I think all children should be told the truth as they can understand it developmentally. This has been studied and showed it helps so much in adherence and well being. But do not be short sighted. What you disclose you can never take back so choose carefully how and when you disclose your child's status and just as you would not run round and tell everyone your child had Diabetes or Hep B or about their conception- you would not share this. Every book on adoption talks about how children need to own and be in charge of their own adoption and birth story and this would go hand in hand with that.


Did you visit AHOPE when you were in Ethiopia? If so, can you tell me about the kids there?

I did! But again I will never get this posted if I answer this now- I will do another AHOPE post very soon.

Does health insurance cover the child or do they consider it a "pre-existing condition?"
It is not a preexisting condition that would preclude an adopted child from being covered.- you adopt and your health insurance must cover your child no matter what- if they have a cleft palate or a heart defect or Hep B they have to cover it. It's your child.

Good questions!

Friday, January 05, 2007

HIV Questions Asked

Here is a photo of an incredible woman and advocate for change I met and worked with in South Africa- I would bet that this country gets past the stigma of HIV much faster than our country. They have set a precedent for change and forgiveness that is impressive.


Here is an email I got the other day. I get emails like this all the time. I thought this one was great and asked great questions. It is so similar to several others I have gotten recently I thought I would post the answers here on my blog. I got permission to post it. I will post this email and then if others have questions add them to the comments and in the subsequent days I will be posting the answers here to these questions and any others that come up. I will also be posting the HIV links that I frequently give out to people so you can do your own surfing on the topic.

"My husband and I are just beginning the process of adoption from
Ethiopia. We are VERY early in the process, we just filled out our
application and sealed it in the envelope to send our on Wednesday
when the post office opens back up. We are hoping to adopt a sibling
pair in the age range of 2-7 years old. We are planning to work with
Adoption Advocates International and part of our decision to work
with them is because of their willingness to place HIV+ children in
adoptive homes.

My husband and I are not sure if adopting an HIV+ child is right for
us, but we are certainly doing our best to educate ourselves about
this issue. I finished reading "There Is No Me Without You" just
before Christmas and I have to admit that book taught me quite a bit
about the origins and history of the HIV virus. I have also been in
contact with a couple of families who have or are in the midst of
adopting a child with HIV.

I know that there are so many kids in Ethiopia (and all over the
world) who are HIV+ and in need of loving homes. My heart goes out
to all of these kids. And I am longing to know more about HIV and
the issues and complications that these kids will likely have to
endure in their lifetimes.

I know from reading your blog that you work with people who are
HIV+. Do you have any references, books, websites, etc. that you
would recommend people read in order to learn more about HIV?

What is the prognosis for kids who are HIV+ in the world today? I
have read in several places that HIV is now considered a chronic and
manageable disease. Is this true in most cases? What are some of
the common medical complications that HIV+ children have to endure?

Do you have any advice for adoptive parents who are considering
adopting a child who is HIV+?

Do you know of any Infectious Disease specialists or any HIV
specialists locally by any chance?

One of the biggest worries I have is not about the medical aspects of
HIV, because I think we can handle those (as parents you deal with
what you have to in that regard, there are no guarantees of health
with biological children either), but I am worried about the social
aspects of HIV. It is still a disease that carries such a negative
social stigma (though I still haven't figured out why). How can
parents become prepared to deal with these social issues? Who do you
tell? Who do you not tell? How do you deal with discrimination
against HIV+ children?

Do HIV+ children pose a risk to other children in their homes,
schools, churches, etc.?

My friend is a nurse and I couldn't believe her response to my comment
that we might consider an HIV+ child. At first she asked me why we
would do that...and then when I told her that my understanding so far
is that they don't pose a great risk to other people as long as you
take precautions in the rare occasions when they are needed. I
mentioned that it was considered a chronic yet manageable disease and
her comeback was "yes, but its an INFECTIOUS disease". How can we
educate ourselves about HIV and the risks...and then how can we
educate our friends and families to understand the issues?

I would appreciate any help that you could provide. I feel like I am
asking "stupid" questions sometimes, but I really want to be able to
make an educated decision about this for our family. We do not have
any children, so our adopted children will be our firsts. We may or
may not add biological children or other adopted children in the
future.

Even if we decide that adopting a child that is HIV+ right now is not
right for our family, it may be right for our family later. And, if
it still isn't, I certainly want to support the adoption of HIV+
children. They are so deserving of loving families.

Did you visit AHOPE when you were in Ethiopia? If so, can you tell
me about the kids there?

Thank you again...I hope that you and your family have a very
wonderful new year!"

Monday, January 01, 2007

Happy New Year!

It's hard to believe that one year ago we had just started this journey- just one year ago sending in the application fees to our agency, Christian World Adoption. And on Maren's intake sheet the date is January 2, 2006. That would be one year ago tomorrow. So we have guessed that this is the time he was brought into care. He was so weak he couldn't walk and spent two weeks in the hospital. As far as we can tell he was without parents for about 2 years and at some point a kind man named Ashango took him in and he was the one who brought him to the orphanage. Maren says only nice things about this man and we are so thankful for him.

Here are my children on Christmas Eve before Church. We were blessed in Denver to have a white Christmas, which is something that does not usually happen! Its also probably the last time I will be able to put matching shirts on my three sons!

Our good friend Luana and her boys came over Christmas eve, She and Maren have a lot of fun together. She has been a huge help since we brought the boys home last June.



This is my sister and her kids on Christmas Eve. We wished we could have been together. My mom came this week and so I was able to steal her camera and the photos she took while in New York!

These are my kids on Christmas morning with their stockings. My good friend gave us (15 years ago) a gift of making stockings for all of our children as they come into the family. I was lame and did not tell her about the boys in enough time to have stockings made. It has been a great wedding gift...but I think they probably thought they were done with Phoebe!


Happy New Year!