Tuesday, February 26, 2013

Adopting HIV- updated and updated again!

We want to share our experience in hopes of encouraging others to adopt a child with HIV. 

I can tell you about my experience but it is not all my story to share so I will not identify our child that is HIV positive.

We were one of the first families to bring home an HIV positive child from China. 
The adoption process was no different than any other special needs adoption.
However we needed to follow CDC rules in order to bring that child back to the USA.

For three mornings we brought our child to the health clinic for sputum tests.
They nebulized him/her to loosen up the secretions and then had him/her cough up whatever he/she could into a cup.
The health care providers were helpful and encouraging.
Our child responded to this and did just fine.

When we first started to consider this special need we had many of the concerns that you probably have-

Will our family be safe?
 Could we get it?
What is the life expectancy?
What is involved when caring for a child with HIV?
Will children that play with this child be safe?
Will future grandchildren be safe?
How easily is it transferred from person to person?

Who do we share this information with?
Who do we NOT share this information with?

Will my child be unaccepted by other children or families?

Is he/she putting others at risk with playing sports?

Can he/ she have a relationship with his or her spouse?

Will his/her children be HIV positive?

Are their other families that have adopted HIV children and are there support groups?

Our Story-

It started when we saw a picture of a cute little child with a scary diagnosis.
Although the diagnosis sounded scary their was nothing about the child that was scary- in fact we were completely taken by the picture.

In our first conversation about adopting a child with HIV we decided we needed to know the answers to all the question above!

I started by researching on the internet. Then we discussed how 20 yrs ago so many people would die with this diagnosis... except Magic Johnson was still alive? (hubby loves sports so he identifies with this) 
One of the first HIV meds was developed at our University of MN. It was big news around here and everywhere!
We sent the file to our local adoption clinic and they referred us to an infectious disease doctor.
She reviewed the files and got right back to us. She made herself available to us if we should have any questions.

We found out that many of our fears were do to a lack of knowledge.

We learned that HIV CAN ONLY be spread through sex and needles.
That's it... really, that is it... and since neither of those would be happening in our house we would all be fine!
We needed to know that we were NOT putting others or ourselves in danger before we proceeded.

That even though we would be around our child all the time we would not get HIV from this child and neither would anybody else. 
We learned that he/she would be put on appropriate meds and that the virus would be basically undetectable in blood tests.
We learned that if the child has a cut and we have a cut- that NO ONE HAS EVER become HIV positive through the mixing of blood in open wounds.

We learned that HIV is NOT present in saliva, urine, or feces.
And that the virus dies the minute it hits oxygen.
So you can freely hug and kiss your child and even share a dessert!

The life expectancy of a person that is HIV positive is currently undetermined.
because the oldest people that are taking the meds are still alive AND they are in their mid to upper 60's!
(and still going strong!)

So what's involved in caring for a child with this diagnosis?
First thing is send the referral to an infectious disease Dr in your area and hear what they have to say about the referral and the condition of the child.

The children that are on the waiting child list for China are receiving the necessary meds.
To be honest they are actually in fairly good health.
It's their future that is questionable- how will they continue to get the meds they need? Are they actually being followed properly by a physician and once they turn 14 what happens after that?

Our Dr. has us visit right when the child comes home(within the first week or two). She does a physical assessment of the child with lots of questions on what we have seem health wise in our new child, and she will order new American medications for your child. They will draw blood every time you go to the specialist... 
FYI - 
HIV kiddos are used to this and they don't even flinch.

 2 months later we come back for a follow up appt.
  2 months after that we have another follow up appt.

And then if all is well we move onto every 4 months.
So our child goes to the specialist 3 times a year!

We still see our regular pediatrician but they communicate and coordinate the care of the child.

The doctors are very thorough with these children and they really get good care.
If they have a runny nose or cough- they don't wait to see if it turns into something else- they get antibiotics, NEBS or whatever else they need.

We homeschool so we are not exposed to as many germ, and viruses. BUT you do not need to homeschool if you have an HIV child.
They are fine going to school and living a completely normal life!

Children may freely play with a child that is HIV positive and the parents do not need to be concerned.
However, many people are not educated and are fearful of HIV.
You may incur unwanted, unnecessary and unkind feedback if others know your child is HIV positive.

Somewhere along the line you will receive negative and hurtful feedback regarding your child having HIV. It is something that you need to prepare yourself for- it has not happened to us yet. . . but. . . sadly I assume it will happen.

All health professionals and all people who are involved in any kind of medical situations are required to use "universal precautions". This includes school nurses, coaches, EMT's, the neighbor, anyone! If someone chooses not to use universal precautions they are willingly putting themselves at risk.

Do I use universal precaution at my home?
No, not usually- although I am sure it is recommended.
I would seldom wear gloves for small inflictions (such as a tooth being pulled, hang nail, a small scrape, dry lips, etc). We have gloves if we feel it is necessary.
Honestly, this is my child...
I have monitored his/her health every step of the way.
I know this child has a undetectable viral load.
He /she is fine.

The two important things to know about your HIV child is his/ her viral load and his/ her CD4 count. Your Physician will explain this to you.

We are cautious regarding sharing our child's private health information.
You are NOT obligated to share it with anyone.
And since we know our child's health situation we can proceed confidently.
We share it with physicians and dentists and whoever else we feel should know.
We expect them to treat our child like all of our other children.
With universal precautions!

We do feel that it is very important for us to share our faith and love for the Lord with this child and ALL of our children. This child will need to understand the importance of not being sexually active without precautions. We feel this child will need to make good choices regarding future relationships and will need to have a faith background in order to protect others and himself/herself.
This is the main issue that brings me to my knees...
protecting my child and others.

My child will be able to have protected sex with his or her spouse. And as a couple they will be able to have a child that is not HIV positive.

There are support groups out there- both yahoo and facebook groups.
They have been helpful and they are a safe environment to ask questions in and to share your situation.

Would we adopt another HIV positive child?

In a heartbeat!

How do we see our child's future?

This child is incredible! We see this child has having no limitations and having a bright and wonderful future!

The medication for a child with HIV is very expensive.  The child will be on a mix of three different medications. For our health insurance- we pay our deductible in the beginning of the year and then it is covered. I cringe when I hear the amount but then I know it will soon be covered.

Any questions? 
Ask now in the comment section!
Because I will move on to other topics with the next post!

Our agency says that HIV positive children in China are almost "not existence", because China wants to hide away the fact that they have this kind of problem. Do you know anything about that? Are there just a few or maby not any children with Hiv avalible for adoption from China?

Yes, this is true. China would prefer that the world does not know that they have orphan children with HIV. It is an embarrassment.

But China like America is uneducated about HIV.

If families start asking for children that are HIV positive- there will be more and more children available that are HIV positive.
Sadly to say, it is a supply and demand issue.

They will make the children paper ready when families start wanting to adopt them. So start by asking your agency!

Children with HIV in china often go to special private homes to be cared for...
Some are Christian facilities.
All are privately funded and privately managed.
Basically they are top secret.
to protect the people in the care facility. Usually they house adults, children and pregnant woman with HIV. If word got out that they had HIV children and adults they would be evicted from their rented facility and have no place to go.

There are a handful of different organizations with homes scattered throughout China.
These homes try to give the best care  they can to their residents. Usually the children are able to get the meds they need (through donations) and they do their best for the adults too.

BUT the kids can not stay their forever- 
they need a home and they need the medication throughout their lives.
The medication is too expensive for anyone in China to afford long term.
These care facilities are usually pretty good BUT pretty good means a mattress on the floor, 2 meals a day, children with fevers, and little heat throughout the winter.

The children have the opportunity to attend public school.
 However, their health status is not revealed
that would end immediately...

The child comes to you in fairly good health and on medication.
They have had some education.
Sometimes they even know Jesus.
One of our children was sent home with a Chinese bible!

we have more than one child with HIV...

These children have actually been living at a place with consistent caregivers that are knowledgeable and not fearful of their diagnosis.
They have received love and they have attached to a caregiver...

It's a no brainer!

Start asking about these children-
they are there in China
and they need a home!


Jillian said...

Thank you, thank you, thank you for this post. I kept checking every hour or so to see if you had discussed the HIV questions. After some information-gathering this weekend, we felt more confident about our proposed little one's medical needs, but to see you lay out every question in our heads/hearts so succinctly and with such positive answers was the cherry on our decisional cupcake. Our future child's diagnosis is not something we want to discuss with anyone but family for now so it was so wonderful to get some anonymous advice from someone who is managing every day. We will excitedly accept our referral tomorrow for a darling little girl. Thank you Jean

Anonymous said...

Thanks for how thoroughly and graciously you answered that!

I hadn't thought about the fact that the few people who I've seen blog extensively (and openly) about adopting kids with HIV were all non-Chinese adoptions - so that was interesting that you were the first! I've been so grateful to see others trying to help educate because there's so much misinformation/misunderstanding (or really I think just dated information/understanding) out there and I think it's kept precious kiddos being considered for adoption.

I'm so thankful you answered this question! And, like I said, with such dignity for your child, but also in such a helpful way for prospective parents.

God uses your blog to help so many who are considering (particularly adopting from China) and I really think He's going to use this post to make more of a difference than you ever can imagine!

Continued prayers for your family and for each of you to thrive as you follow after Him!

Vicki said...

What a beautiful post! I am sure you will have helped many to make the decision to adopt what was once considered such a scary diagnosis. Thanks for the honest, heartfelt information.
Love your family
Vicki(who would adopt again if my husband was on board and CCAA would give me an age waiver.:)

Serena said...

My husband and I are considering adopting and your
Q&A series has answered so many of the questions that I've had. Thank you for all of the time that you have taken to help people like us understand adoption better.
Also, I met you a few years ago, when Linny spoke at Cherry Hills Community church outside of Denver. I think at the time you had 3 (maybe 4) of your girls. It's been such a blessing to me to "watch" your family grow and learn more about adoption through your blog.

Alison @ Notyetwhatweshallbe.wordpress.com said...

So glad you shared about this, Jean! My husband and I are in China right now adopting a little one (not HIV+) but would very much love to adopt an HIV+ kiddo from China in the future! Hopefully China will start to list more children with this special need as available for adoption and we can get them great homes!!

Eileen said...

When we were in China 6 1/2 years ago adopting our daughter, we met a family adopting a beautiful 5 year-old girl. She looked so healthy and seemed to be adapting wonderfully. As we talked with this family, we were surprised when they mentioned that she was HIV-positive. As far as they knew, she was the first HIV-positive child to be adopted out of China (but you may have been before her!) Anyway, I thought of how difficult that special need must be and how much faith that couple must have and that HIV is a special need we couldn't handle. Well, that was my ignorance talking, and years later, we'd be completely open to adopting an HIV-positive child. LIke any other special need, when you meet a child with a certain special need and see how they're thriving, you rethink things and go, "Oh, I can do that!"

adoption journey said...

Thank you, thank you for this post! I had so many outdated ideas about HIV and you were like a ray of light! I had heard that the cost of the medications was astronomical and insurance didn't cover many of the costs/tests/specialists related to HIV treatment. Is that also outdated information??

Sarah said...

Great post, Jean! Thanks for sharing your experience in this area.

Rebecca said...

Thank you for this terrific insight! I learned something new today!

Megan said...

Thanks for sharing, jean. This is such an interesting topic and what a great way to educate people about HIV.

laurellee said...

Hello Jean...
I too want to say thank you thank you for raising the awareness of this need!!! What a blessing it can be for the children!!!!
His blessing to you!!

Donna said...

ELIM is a wonderful organization in China helping these kiddos.


I was able to personally meet and get to know one of their foster mothers, she is an incredible lady who falls in love over and over again to have her heart crushed by watching her foster children be adopted. She does it for the children!

ourchinagirls said...

Thanks for sharing about HIV on your blog. It never ceases to amaze me that many people still believe that Hep B positive kids are "contagious"!! I completely understand your point about not sharing some of your kids needs with others. Only health care workers know about our kids with Hep B.

Elizabeth said...

I have benefited so much from the information posted about various SNs on folks' blogs over the past 3years. My family would not be awaiting TA for the child we are waiting for now, if not for the information put out their by people like yourself. You did an exceptional job posting good information about this SN while safeguarding your children's privacy. I don't know when I've read a post that walked the fine line so well. :)

Mariam said...
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