June 3, 2013

Secrets, Privacy and Viral Infections

I wrote this blog originally for my non-secret-thoughts blog.
I kept it in "draft" mode.
I've since decided I don't want to share this info publicly since it's not my medical info to share.
I still believe everything written here, and the facts are facts...so please read.

I believe there's a fine line between keeping things private and keeping secrets.
There is an inherent sneakiness to secrets. I urge my children to share "surprises" instead of "secrets" with friends because anything you are keeping a secret is probably just not a good thing to begin with. I also don't trust the term "secret" because of the shady history of using that word to shame children into not telling adults when something has happened that they really SHOULD share.
So, no... I'm not a big fan of secrets.

I do, however, appreciate privacy. There are things within families that are private. There is information shared with your physician which is kept private. Some things should just be private... but in the name of privacy, I've kept silent about information which should be shared.

I tread carefully in these waters, knowing that what has been shared can not be unshared. Protecting the privacy of the information I hold for my children until they are old enough to choose to share or not... it's a big responsibility.

I also do not want my children growing up in this ignorant world any longer. The fear, stigma, shame and misinformation surrounding our "secret" is only growing, while the sharing of information from those who truly know the truth is being hushed for fear of backlash or our children being blacklisted from play dates.  Social stigma being what it is (a killer of self-esteem), I am torn between privacy and sharing of information.

Ultimately, I believe the information is more important that my own personal relationships with other adults and my children losing a few friends or not being invited to birthday parties.

The secret has a name.
It is called Hepatitis B Virus.
There is HepB in our house. I won't tell you which of my children has it, because that's not for me to share. However, I would like to take this moment to educate you, for my children's sake, on the facts surrounding this virus.

1. It is not a virus like the common cold that you can catch in a crowded movie theater or at the grocery store. Hepatitis B is the most common serious liver infection in the world. It is caused by the hepatitis B virus (HBV) that attacks liver cells and can lead to liver failure, cirrhosis (scarring) or cancer of the liver. The virus is transmitted through contact with blood and bodily fluids that contain blood. It is not transmitted through the air, skin-to-skin, vomit, runny noses, or through kisses. I share bites of food with them and I've accidentally drank after them (accidentally because EEWWW. I hate floaties in my drink!). Your kid won't get it from mine in the classroom, on the ball field, or at the pool.

2. It is not a death sentence. Most people are able to fight off an hepatitis B infection and clear the virus from their blood. This may take up to six months. While the virus is present in their blood, infected people can pass the virus on to others.The CDC reports there are approximately 1.25 million Americans infected with HBV. They sit by you at church, serve you food at restaurants, play with your children at the park, and they may even be your family physicians.Approximately 5-10% of adults, 30-50% of children, and 90% of babies will not get rid of the virus and will develop chronic infection. Chronically infected people can pass the virus on to others and are at increased risk for liver problems later in life.

3. Do not be afraid. Clearly, I'm on the more laid-back end of the spectrum with HepB... but I've consulted with experts, multiple doctors, specialists and my own common sense and here's what I know: you aren't going to get HepB from being around my kids. I don't even worry about my other children in the home catching it because I clean up the blood around here and I'm relatively smart about it. Yes, I've grabbed a bleeding hand to apply pressure without first looking for a pair of latex gloves. I'm smart enough to know not to grab a bleeding hand with any open wounds on my own hand.  However, as we were told from one of the leading specialists in the country - even if no one in our family was vaccinated for HepB and we happened to all be in a big car accident and there was lots of blood and no way of knowing whose was whose... we would still have 48-72 hours to get vaccinated and beat the virus. If your children are on the normal APA vaccine schedule, they've been vaccinated against HepB... so, as long as the vaccine is doing what it's supposed to - you have no worries!

Why do I share this information with you? Why now? 
Well... I've overheard multiple times recently "I'd be totally fine adopting a child with HIV, but hepatitis scares me to death!"   I've heard horror stories of families being "outed" at school by the nurse (calling all of the parents in the child's class to inform them). I've heard false information shared (you actually CAN'T catch it from sharing sippy cups. There's a slight chance if there's blood on the sippy cup, but I've never heard of a single case of HepB transmitted through sharing of cups. Neither has my pediatrician or any of the specialists we see.)

I share so that you know we have a pretty sick kiddo here. Our child's virus is active and attacking the liver. It's causing damage and it's time to treat with some high-powered medicines. This will be a 6-month course Interferon treatment and it's not likely going to be a walk in the park. The side-effects cause loss of appetite and for this particular child with no real appetite to speak of... this could be cause for concern. Yes, this child's virus is more "active" and therefore likely more contagious. That doesn't mean your child is more likely to "catch it" from our child, it simply means that should their blood mix together, then yes - the likelihood is higher.

I share so that you know what we've been through. Many, many, many blood draws, doctor visits, ultrasounds, a liver biopsy right before Christmas, meetings with specialists, supplements, researching, praying, hoping and watching like a hawk for changes. This week brought 3 doctor appointments and tomorrow - an upper and lower GI scope procedure just to rule out any hidden issues before we start treatment.

What does our course of treatment look like? Well, it's 24 weeks of weekly injections - done by me at home. It's approximately every two weeks doing more labs, monitoring and just being diligent with our child's food intake and nutrition (mostly because of the weight loss aspect for a child with no weight to lose!) But, other than that... we will go on like normal. We may have a laid-back day at home if the flu-like symptoms pop up, but we will keep doing what we like to do and keeping things as normal as possible.

What can you do?
Stop lies when you hear them. Help stop the stigma. Don't whisper behind our backs or try to guess which child I'm talking about. Pray for total healing and that the "sliver of possibility" that our child would clear the virus totally would be reality for us. Pray for my stamina.

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