Also, please note again that we DID KNOW of our daughter’s positive Hep B status prior to being placed with her (even knowing what we know now would have not made a bit of difference for us). Most of our children have some sort of medical condition so we were not looking to adopt just a “healthy” child…not that everyone doesn’t want their child to be as healthy as possible of course. Just wanted to clarify that we were not under that impression or mindset and were very aware of the possible concerns. No matter how prepared you are, it is still devastating to learn that your child may be a worst case scenario when it comes this disease. That’s probably why my focus is on finding a cure for the already infected. Most children with Hep B grow up to live happy and full lives. My energy is being spent trying to make sure my daughter is one of them. I really believe that a cure is out there waiting to be found.

~Michelle

It is important to remember than one medically recognized method of transmission on Hep B is close contact among infants and toddlers, especially in a hospital or orphanage setting. It is entirely possible that your child could have been Hep B negative at the time of testing, and then contracted the virus prior to coming home. The method of transmission is not fully understood, but is not thought to be caregiver-related; rather, it is from child-to-child, either airborne or through contact with surfaces that another infected child has touched. Unfortunately, a child who is infected in the orphanage may not test positive for the virus for a period of months. It is really not fair to assume that either the care-givers, orphanage directors, or agencies could prevent these exposures. This is the NUMBER ONE reason why we as PAPs should ALL be vaccinated for Hep B and should verify that our other children already at home are vaccinated for Hep B as well. This method of transmission is also one of the strongest reasons for re-vaccinating upon arrival in the U.S. Please take Tracy’s situation to heart and protect your own health by getting the Hep B vaccination series prior to going to VN, and repeating it with your adoptive child upon returning home. I know it is no fun to get three (ugh!) shots in three seperate doctor visits (and to pay for them if they are not covered by your insurance), but Hep B is a chronic, incurable disease that you should NOT gamble with!

The realities of adoption are that there are no guarantees. I am so sorry that Tracy and Michelle are living examples of the reality of the fact that a perfectly healthy child is never a guarantee, no matter how that child is added to your family. Certainly, we are all accepting some risks by agreeing to be a part of the adoption process. Please know that I am not being insensitive when I say that; rather, I understand the difficult road that your families face. Our prayers are with you as you battle a tough disease.

I am not enough of an expert on epidemiology to comment on whether vaccination in Vietnam is a good idea or not. Perhaps it is an issue that should be addressed with the CDC, with your individual family physician, or perhaps with medical experts in the Hep B field. My guess is that since it usually takes 6 months to complete the Hep B series, there will still be some Hep B exposure risk during the time that the child is residing at the orphanage. Good luck to you, Tracy, in your efforts to help increase the overall medical care throughout Vietnam. You are a hero for trying to turn your own heartache into an opportunity to serve other children and their families.

If you find a bandwagon for curing our children please send it my way because I will be on it in a heartbeat. I, of course, am hoping my child never needs treatment and the virus just kind of stayes in the background (luckily there is no liver involvement yet, but the viral load is very high). I don’t think there is a “cure all” solution to this, I wish there was. And if I thought I could get anything done by advocating for a cure I would be there whole heartedly. I don’t think vaccinating the children will save them all, but what if even 1/2 of those that are destined to get the disease do not because of 3 simple shots? That is significant in my mind. Right now there is an easy way to help prevent this disease (as opposed to curing those who already have it) and if my actions get even one agency to start vaccinating in their orphanages then I will consider this a huge success (although my goals if for them all to do it). I don’t blame the birth mothers, most probably don’t even know they carry the disease and I am not advocating they get any shots for themselves or their babies. But what about the next baby girl who is left on the orphanage doorstep and is less than 12 hours old (I have seen several places where they say within the first 24 hours even) and the orphanage had the vaccine on hand and vaccinated that baby right then and there. What if that could save that baby girl from developing the disease, who out there would say that was not worth it? I’m not trying to argue with anyone (that’s why I haven’t commented here again), we all have our opinions and we are all entitled to them. But the more research I do on this project the more convinced I am it’s a valuable thing to spend my extra time on. I sincerely wish only the best for both of our children. If there were a cure for this I would be traveling to wherever in the world it was to get it for my child (as I am sure you would also). I don’t feel like there is anything I can DO medically (I know about healthy diet and of course LOVE) for my child but wait and see….so I am trying to do something worthwhile in the meantime to help those left behind. Good luck:)

Tracy X
http://www.hbvparentadvocate.blogspot.com

I have to tell you that many people here who think they are immune, really aren’t. Our entire family has been immunized (there’s 9 of us) . When B~ came home and we were told about her high viral level, we were all tested for the antibody and my daughter who is 7 and my two sons who are 13 and 15 came up at a level 3 and below. They had to get a booster and I won’t know until 6 more months from when they got the shot to see if they are now showing enough antibodies. So immunizations are not a total cure all.

Also, most kids (almost 90 %) who have the chronic Hep B virus are just deemed carriers meaning that their viral count is low and the virus remains in an active but sorta harmless state for their for most of their life, if they lead a healthy lifestyle. That’s what we were hoping for but sadly this isn’t the case with our daughter.

I think about it all the time but seriously, how can a birthmother get the Hepatitis B immunoglobulin (HBIG) shot when she can’t even feed her baby and can’t find the means to take care of her in the first place? My daughter was abandoned in front of the orphanage. Thank God her birthmother was able to even have the mind set to put her there. I don’t think for a moment that we can put ourselves in that place.

I sincerely hope we can help our child. She is an AMAZING person already! I think focus should be put on people curing the already infected people. Of course this is not rampid here because we are all vaccinated in our country and so we will be waiting on the back step for some miracle cure.

I am not sure what your daughter’s prognosis is but I can handle the stigma, I can easily handle the ultrasounds and biopsies, it’s the liver transplant stuff and medications that might not even work that is scaring me. These are HIV medications that destroy your pancreas as well as jepardize other organs. I am thinking future liver transplant here. I just want my daughter to live. I am scared more than ever and I have been through more than I choose to share here as far as medical concerns with my other children.

Praying for our children and all the others who follow.

~M~

So how can we rally for our already infected children????

I agree with Nicki here that proper education for the nannies and caregivers is the key element. I have personally known a beautiful young lady that needlessly died of Hep in Vietnam. She was a part of an affluent, well-educated family there. Even with all the wealth, status, and education afforded her family she still died of this completely preventable disease. It takes more than simply supplying the vaccine from the US to health care system in Vietnam. Illness and disease are perceived in a completely different way than it is here in the US. Yes, there are hospitals and clinics there, and yes, illnesses are treated there, but having an illness or disease in that culture is handled in a different light there. It’s a part of life, and if an orphan, who realistically has very little value in the society has such a disease, oh well. There are not many people there in Vietnam that will go out of their way to do more than what is required to care for the orphans. And, the only ones falling under any requirement are the ones that are eligible for adoption. The ones that are going to be adopted get some better care, but not much. Insisting on vaccines at various intervals, and creating more work to care for the “dust of life” is not realistic. There are thousands more orphans to replace that one. It is sad, and horrible by our standards, but it is not our standards or our culture. As you are well aware, Vietnam is not the US. (And please don’t get me wrong here. I do not think we are better people, but we are a richer people in general living in a much wealthier more privileged society. Along with that brings a completely different attitude toward life in general and we have become accustomed to taking for granted things such as medical care and having food to feed our children.) We are privileged enough to be able to get good vaccines, have health care standards, and fairly local medical care. Our children are protected under our laws to receive medical care and a certain level of care for our children is expected by our government and culture. (Yes, I know this isn’t always the case and I know all about the health care debate here, but it is available and the standards are higher. Yes, there are poor, neglected, and terribly abused children here. I’m not wishing to start that debate, but stay on topic with VN and Hep.)

I do believe sadly each of the following situations I’ve listed does and has happened: medical records are changed, tests are improperly taken if at all given, and that vaccines if administered may be given with used needles or bad vaccines. My daughter only showed titers for one of the vaccines she supposedly had. She also came home extremely ill from a completely preventable illness and will have to take medications, as well as undergo possible surgeries, for the rest of her life because if it. It boiled down to a ratio of way too many babies to caregivers and no education about germs, viruses, and bacteria, and how long a child can sit in a soiled rag. I don’t blame the orphanage workers so much as I blame the director. She is educated and she chose not to oversee that the care given to the children in her orphanage was sufficient. Nor did she educate her staff. Also, I know for a fact that when agency representatives or PAPs arrived a charade was put on to impress them. The orphanage was cleaned, the babies were cleaned, toys appeared that were always stored, etc. This is also why I think that an agency representative should be staff, or at the very least oversee the care of the children being adopted to PAPs in their agency.

I think that an agency does have some responsibility to do what they can. And that “can” is going to the orphanages to conduct training, hiring staff to oversee and make sure guidelines are being met, and I believe, should include hiring a physician to evaluate the children (not just accept that whatever is written on the medical documents they receive are indeed facts!) It is what our money pays for, and I’ve heard that in some areas, foreign fees are higher to pay directly for the daily care of the child. That care should include medical.

Tracy I do hope that you will continue to be an advocate for change in the Vietnamese health care system. Most times change comes from those who have been impacted. I would kindly suggest your first step being to delve into their culture and study and research their economic and social structure. Knowing how the Vietnamese work and live first will help you in your quest to becoming an influence of positive change.

The CDC makes no illusions about the fact that Hep B and other vaccines are not going to protect all people who receive them. They admit that 10% or more of those who receive three shots will not receive immunity and that number may, in reality, but significantly higher because Americans have been miseducated about vaccine effectiveness and led to believe that if we have our series-of-3 we will be protected. How many people do you know have followed up on their children to see if the vaccine series was effective? Probably not many, if any at all. And that is in our safe, clean, prosperous environment here in the US. If you take into consideration the added effects of old, contraband or improperly kept vaccinations and unclealy administered injections I would not be surprised if the effectiveness in Vietnam orphanages is much much lower than in the US.

Let’s also think about the overall effect this would have on children living in orphanages, even presuming every child with 3 doses will test protected eventually. How many more needless months would a child have to spend in poverty and emotional neglect living in an orphanage just to be sure they were properly protected from Hep B that would likely be irrelevant by the time they made it home to the US ? The series takes 6 months from first shot and if a child is not even referred out until 6 months after s/he is otherwise ready to be referred out, this drastically increases the length of time an infant or toddler would be required to stay in an orphanage. A newborn would be looking at walking out of the orphanage after the age of 1 with all the delays.

I believe it is missing the mark to focus on a program such as you are suggesting. Although, at first sight, it seems to put responsibility onto the agency I believe it may result in the opposite. It is easy to falsify medical documents, it is also dangerous to force vaccination programs on orphanages that can barely feed their children because corners *will* be cut and vaccines sources could be black-market and injections may not be administered properly or safely. The end result could be devastating on a much larger scale, meanwhile agencies wipe their hands becuase they’ve done their part by insisting on these things.

Instead I think we should put responsibility back into the agency’s hands to put our money to work and make orphanages safe and healthy. Hep B should not be spreading through orphanages, period. The prevention of this disease requires nothing more than education and proper training. Why are agencies still supporting orphanages that are not willing to put forth efforts to properly train their nannies in this very basic of care standard? Universal precautions are essentially free - much less than Hep B vaccination series. Agencies should be committed to this at a very minimum.

Furthermore, agencies should have on-site staff who make frequent enough calls on the infants they have referred to their families that they can oversee medical care both on-site and especially in the hospital. The agency, itself, should be responsible for the referral physical so they can attest that the tests done were done in a safe and healthy environment with trustworthy results. One issue you did not raise is that sometimes babies are very much known to be Hep (B & C) positive but their results are hidden or covered up since they show no symptoms. Still further, some babies are not tested at all and their medicals are falsified. If your agency is not physically present at the orphanages frequently, this is more likely to happen. If a referred baby needs to be hospitalized for any reason, it should be the agency who arranges for this with western hospitals. This is part of what our foreign fees pay for.

Hep B is passed blood to blood contact. If a caregiver had the infection and an open wound and also cared for an open wound on the child (without gloves) they risk transmitting the disease. My friend has a baby whose father is Hep B+, she said whever he changed a diaper when the baby had diaper rash or diarrhea that may have caused inflammed/broken skin he wore gloves because he has very dry skin on his hands which sometimes bled. If that would have been enough to transmit the disease I don’t know and they only really worried about before the baby was fully vaccinated. My baby has a scar which we and the doctors think is the result of what looked like a pretty bad burn. It could be that an infected caregiver tended the wound and she also had an open wound. I do think it’s way more likely that my baby was exposed during a hospitalization which my agency has not confirmed, but I have reason to expect our child was hospitalized after our referral. Our baby could have got injections or IV fluids with infected needles. There is really no way to know what happened, but we are not alone. I have spoken with way too many families that are coming home with infected children. Unfortunately due to privacy issues you don’t see it talked about much on the APV or public boards.