The following is written by Tracy X, an adoptive mom who prefers to remain semi-anonymous:
My child, who was adopted in from an orphanage near Hanoi, Vietnam, tested negative for the Hepatitis B Virus (HBV) at 3 months of age when the adoption physical was completed. Less than six months later it was discovered, during routine international adoption lab work here in the U.S., that my child is HBV positive with a very high viral load. The antigens that were tested for at 3 months of age (which are only present when there is active disease) are detectible within 4-6 weeks after exposure to the virus, so most likely the exposure was not by a birth-mother but at some time after that first test. I believe (although we will never know) my child was exposed sometime after this initial testing during an illness or hospitalization or by an infected caregiver. If our agency and/or the orphanage had participated in a routine Hepatitis B vaccination program, our baby would not have become infected, even if exposed to the virus. Three small shots could have saved our baby from a lifetime of blood tests, liver ultrasounds, potential liver cancer and the stigma of having this disease. That is why it is my goal to ensure this does not happen to any other children. Although it was shocking to find out our child is positive for this disease, it is our child who will live his/her life dealing with the consequences of what that entails. I would love to see every Vietnamese child living in an orphanage vaccinated; I plan on advocating continuously until Hepatitis B vaccinations are routine in orphanages.
Hepatitis B can be a devastating disease to adopted children and their new families. Many babies from Vietnamese orphanages are infected with this virus, but what makes it so sad is that it is a very preventable disease. The Hepatitis B vaccination is readily available and safe. Moreover, simple universal health precautions, such as not re-using needles, can go a long way in preventing the virus spreading.
Did you know a child born to a Hepatitis B antigen-positive mother that is given the Hepatitis B immunoglobulin (HBIG) shot and the first dose of the Hepatitis B vaccination within 12 hours of birth has only a 5 percent chance of developing chronic hepatitis? Yet without these shots approximately 90 percent will develop chronic hepatitis. One of the biggest predictors of whether a person will develop chronic hepatitis is the time in his life he is exposed to the virus. If exposed during infancy 90 percent will develop chronic hepatitis. That number drops to 30-50 percent if exposed as older children, and only 10 percent of adults who are exposed to the virus will become chronically infected.
Therefore, the need for vaccination as early as possible is paramount in protecting all children. Due to the nature of this disease, treatment with available medication is rarely an option for those infected as infants or children, so they end up living their lives knowing they are infectious to others and are often stigmatized by society or peers. The long-term complications of this virus are cirrhosis of the liver, liver failure and liver cancer. Eighty percent of all primary liver cancers are due to this virus, with a five-year survival rate of less than 10 percent.
As many of you probably know, it’s standard practice to re-vaccinate our internationally adopted children once they enter the US because it’s unknown if the vaccines they received were actually given or how effective they were. The beauty of the Hepatitis B vaccination is you can test for immunity, which will be proof that the children really are being vaccinated. When you receive your referral the child will have already been tested for what is called the Hepatitis B Antigen (this is only positive if the child has active disease), but I am advocating (once this program is implemented) that you not accept a referral unless you also see a titer for Hepatitis B. The Hepatitis B vaccination series takes at least 6 months to complete (the first shot is given anytime, the second one month later and the third 6 months after the first shot). Below is an example of what the titers should look like…
If your child has a negative antigen and a titer with a value above 10 (for children 6 months or over) they have developed an immunity to this disease and are protected.
This is such an easy and doable plan. If every child who is estimated to be less than 12 hours old at the time of relinquishment or abandonment were given the HBIG shot and the three Hepatitis B vaccinations, most would never become infected. If all children entering the orphanage and those there now were to receive the Hepatitis B vaccination series, they would be protected for life from contracting this disease. According to the Hepatitis B Foundation, it is safe to vaccinate children (although it will not prevent the disease) even if they are already infected with the virus, so routine prescreening would not be needed. It is my hope that someday in the near future all referral medical reports will include not only testing for the hepatitis B antigen, but also a titer proving the child did in fact receive the vaccination and has developed an immunity to the virus.
Questions to ask your agency:
1. Do you already have a Hepatitis B vaccination in place in your orphanages? If not, would you be willing to implement one?
2. If you do not already have a program, what barriers do you or your Vietnamese representatives anticipate to starting such a program?
3. How many of your children have been negative at referral for the Hepatitis B antigen but tested positive in the United States?
4. Do you currently have any teaching/education for the staff/caregivers on the use of universal precautions, how this disease is transmitted and how to prevent transmission through blood to blood contact?
I think this is such an important issue. I want everyone to know Hepatitis B is easily preventable and no child should have to needlessly be infected by this virus. It is my sincere hope that no other adoptive parents have to find out their child is positive, but more importantly I hope vaccination in orphanages becomes the standard practice by all agencies thereby preventing this disease for all of our children.
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The Editors of VVAI would like to note that we have some reservations about what Tracy is advocating.
For one thing, some children who are vaccinated properly still don’t show any titer immunity. For instance, my son, “Zeeb, was adopted at 3 1/2 and had been given all 3 HepB vaccines in Vietnam but has tested with no immunity and is having to redo the HepB’s in the US. Our doctor told me it could be due to receiving improperly kept or out of date vaccines or it could be that his birthmother was a HepB carrier and so the initial shots were not enough for him to develop immunity. In any case, my concern is his titers would have shown zero immunity even though he was vaccinated ”“ and under Tracy’s plan that would have indicated that we should turn away his referral.
Also, Vietnam recently had serious issues with the Hep B vaccine. Two locally produced batches of vaccine were banned because some infants died after being vaccinated. So we also have a concern that insisting that children be vaccinated may in fact pose a greater danger to them than waiting to vaccinate in the United States.
However, we feel this is an important issue to discuss and we’d be interested in hearing other viewpoints. What do you think?
11 Responses
Christina said it was OK for me to post on their concerns. I thought about the issue that some children will not be showing immunity, there are instances where people (for unknown reasons) never show immunity, but that is rare. My thoughts on the subject are this, if you were to get a referral of a child that was not showing titer immunity-ASK QUESTIONS. Is this an issolated case? Are all other babies that are being referred showing immunity and it is just not your child? In that case, I would say for whatever reason it’s probably not related to the vaccination. But if your child and most or none of the other children are showing immunity, then that’s a problem. It could be whoever is giving the vaccination is using out of date or improperly stored vaccine. Maybe they aren’t giving the shot at all and are selling it or just don’t see the value of the program. I think that is a problem, I am advocating that the AGENCIES get involved in this and if that were the case then more education may be needed or maybe the issue of vaccinations needs to be addressed with the director or higher up.
Regarding the bad vaccine that was produced in the country, I agree I would not want to harm children over a vaccination. But this vaccination is supplied by the US also and could be shipped over if needed. The good thing about the article referenced is they stopped using those batches immediately and are investigating. There are other places this vaccine could be bought, so IMO saying lets wait until the children get back to the US to vaccinate isn’t a good idea. They are at highest risk when they are in the country, that is when they need the protection of the vaccination the most.
I don’t have all the answers, but I have been doing a lot of research and talking to a lot of people and I will try to find answers to any issue that comes up. As I told Christine in an e-mail, none of this is going to help my baby, I don’t gain anything from this. It’s just my hope that no other families have to go through this. I just wanted to end saying this is not the end of the world for my family, we of course adore our baby, but it is something we would have loved to have avoided.
Thank you,
TracyX
First of all, Tracy, I’m sorry to hear about your situation. I wish the best for your little one and your family.
Second, do you have any idea *how* your baby may have contracted Hep B from an infected care giver? Scary things are running through my head about transmission from a Hep B positive care giver. I’m not naive, I know Vietnam is an underdeveloped country but you also don’t get Hep B just from ‘drinking after someone’.
Lastly, I am one of those “rare” few who never developed immunity with this vaccine. I had the series of 3 shots and then 4 boosters and never developed any antibodies to the virus. Unfortunately, I don’t think any vaccine out there is a fool proof answer to preventing a disease in ‘every’ person.
Jenny, there are a couple of people on the adoptive parents group I am a member of that don’t have the immunity but have had the shots. I have never asked a doctor about this, but I do know one parent said they think those people (for whatever reason) may have a natural immunity to the disease, so if that were true those children wouldn’t contract the disease. I agree there is no perfect solution to this problem and I guess if people were to require the titers be run then they could evaluate the results case by case. To me requiring that the agencies test for titers is kind of a check on the system because most of the children would show some kind of immunity. And if people don’t care about that then that would be their choice.
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.
TracyX,
When a person has natural immunity to HepB, they will test immune and past-exposed (to extremely simplify the medical jargon). When a person is vaccinated, they will only test immune. In other words, when a person is naturally immune to this disease, they will have at least two indicators that will show up in blood panels. It is quite easy to see when a person has natural immunity.
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.
Great discussion! Tracy, my condolences, as this must have made what’s normally a tough transition even more overwhelming and difficult. I commend you for taking the negative part of your experience and trying to find a way to make positive change. That is truly amazing. Please keep advocating and continue talking about this, even if the perfect solution hasn’t become evident yet.
One point I’d like to emphasize (Nicki touched on this ) is that agencies have been known to falsify medical records. I don’t think that scary fact gets enough attention. I’m not saying this is necessarily what happened in Tracy’s case – I have no idea – but I do know of other instances where this has occurred. If you cannot trust your agency, then it’s impossible to know how or when your child was infected.
In terms of whether or not the titer campaign would be effective, I’m not sure either way. I think it’s a good idea in theory, but there are a lot of potential pitfalls that have already been mentioned. Plus, my skepticism is again that, ultimately, the agencies get to touch the medical records before they’re seen by PAP’s, so you still have the potential for forgery / falsifying documents at that stage.
Tracy X,
First, I am sorry that this particular issue has arisen for you and, in particular, your child. I know it will be a life-long adjustment for your child and your family. I’m impressed with how you’ve taken the bull by the horns, so-to-speak, and have clearly been seeking education and facts related to the disease. However, I do have to say that what you are proposing may not be realistic for many reasons, some of which Chris and Nicki have already stated. One reason that I didn’t see mentioned was in regards to the statement about newborns being vaccinated shortly after having been born to a Hep positive mother. This is true, but many, if not most, of the children in orphanages are not born in hospitals. They are born in the birth-mother’s home or village with no attending conventional medical care.
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.
Tracy, I am in the same situation… sorta….we knew about our daughter’s Hep B status before adopting her though. I love my daughter and no matter what…I wouldn’t do anything differently.
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????
Michelle,
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 am so sorry that your family is experiencing the realities of such a difficult disease as Hepatitis B.
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.
I just want to say thank you for your prayers and also high praises to Tracy for taking this on. IT IS important and what you are doing IS valuable. (I didn’t mean to sound like I didn’t think it was.) For me, I just don’t know how great the effect would be, especially the use of the Hepatitis B immunoglobulin shot. I agree though that if ANY children benefited that it would certainly be worth while. Cudos to you Tracy for having the time and energy to take on this challenge.
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
Are there any statistics regarding how many children adopted out of VN end up being positive for Hep B? I guess I am just wondering how significant this problem is. My thoughts and prayers are with all of you dealing with this difficult situation.