by Eileen, mom to Maya from China who is HepB+
May 23, 2006 was a landmark day for our family. The day started with a phone call from our adoption agency. They told us that the night before they had e-mailed us the file of a special needs child and they wondered if we’d had a chance to see it. We couldn’t hang up fast enough to get to our computer! It was early in the morning and our 3 children were still asleep when my husband and I excitedly logged onto our e-mail. My hands felt clammy and my heart was racing. As first-time adoptive parents, I had always wondered how our adoption story would play out and now this was it. We read through this baby girl’s file, stifling tears as went, savoring each piece of information. So this is the new birthday that will be celebrated in our home every year, this is the Chinese name that I may not know how to pronounce now but will soon be ingrained in my heart, THIS is our daughter’s story! Everything about that morning felt so historic.
I wanted to sneak up on her pictures, kind of casually take her in starting with the tip of her head and then I could work my way down, stopping to process each bit of information. Somehow I scrolled too fast and suddenly there she was–a round-faced, healthy-looking 6 month old, sitting in a walker, jauntily kicking up one little bare foot into the air. She literally took our breath away. It was like looking into the face of a long-lost friend; she felt that familiar. And truth be told, from my biased perspective, she was and is simply stunning. She could be a poster child for non-special needs China adoption. Her face and body were completely whole and perfect, her coloring was healthy, she was developmentally on-target, her weight was right where it should be, and there was absolutely nothing about her that anyone, even a doctor, would point to and say, “special need”. Her special need is found only when you look at the results of her blood test. It’s a special need that she shares with upwards of 1 out of every 5 people in China. She’s positive for the Hepatitis B virus.
Hepatitis B is a virus which lives in the host’s liver cells. Our daughter, Maya, most likely got the virus from her birthmother. It’s also possible that she got the virus from a re-used needle in the orphanage. Considering the predominance of the virus in her birth province of Guangxi, it’s most likely that the virus had been passed from generation to generation in her birth family. A recent study in Guangxi found that 76.9% of those tested showed evidence of either past or current Hep B infection. Interestingly, they found that among children the boys were more likely to have Hepatitis B than the girls. The theory of the researchers was that mothers are more likely to take their boys to the doctor where they may be given unclean injections. Sometimes people mistakenly think that only a promiscuous lifestyle or IV drug use lead to Hep B infection. While it’s true that those lifestyle choices put someone at high risk, the virus is so common in China that absolutely no assumptions can be made about the lifestyle of someone with Hepatitis B. It’s highly probable that Maya’s birthmother never knew she was infecting her baby because she may not have known she had it herself.
Children who contract Hepatitis B at birth have a 95% chance of chronically having the virus for the rest of their lives. An adult, on the other hand, who contracts the virus has a 95% chance of clearing the virus within 6 months. The maturity of the host’s immune system accounts for the imbalance. A baby’s immune system does not see the virus as a foreign threat, whereas an adult’s mature immune system quickly recognizes the invasion and launches an all-out immune attack. Once someone has cleared the virus, or seroconverted, their body forms antibodies to protect itself from further infection. Some adults who have these acute (less than 6 months) infections become quite ill when they’re clearing the virus and others never know anything is wrong and only find out at some later date that they show evidence of a cleared Hep B infection. My father-in-law contracted Hep B from a needle stick while performing oral surgery on a patient some 40 years ago, before there was a Hep B immunization. Like most other adults, he quickly cleared the virus and has suffered no ill effects. He can’t donate blood, but other than that, it hasn’t impacted his life.
Most kids with chronic Hep B are in the “immune tolerant stage” when their bodies are ignoring the virus. They are “tolerating” the virus. The virus is there and replicating without any resistance since their immune system isn’t fighting it. Usually they have extremely high viral loads that make it difficult to ever clear the virus even when their body does recognize it and start to fight it. The presence of the virus is most likely inflaming their liver, but serious damage is usually not happening during childhood.
Although fighting the virus can be a good thing (as it is in an acute infection), since the virus is located in the liver cells, when the immune system attacks the virus it is also attacking and killing liver cells. A certain degree of liver cell death happens in everyone, but when the liver is under constant attack, it can scar (fibrosis, and in severe cases cirrhosis) and it will be constantly be making new cells to replace the ones that are being destroyed. With all of this dying and regenerating of liver cells there is more of an opportunity for malignant cells to form leading to liver cancer. Liver cell death is measured by blood test and when a person’s liver enzyme levels are more than twice the upper limit of normal, it shows that they are actively recognizing and trying to clear the virus. This is known as the “immune clearance stage”.
As I said though, most kids are in the immune tolerant stage. For these kids, usually they are monitored with bloodwork every 6 months and see the doctor maybe even just once a year. They go to a pediatric gastroenterologist or possibly an infectious disease doctor. Generally they are also getting a liver ultrasound every year or maybe every other year. There really isn’t anything that needs to be done on a day to day basis. They really can live a completely normal childhood.
If a child is actively fighting the virus and sustaining liver damage (which can be confirmed by biopsy) there are a few treatment options. Interferon is a drug that is injected weekly (either once or three times a week depending on the type of interferon) and it stimulates an immune response. Its purpose is to strengthen the fight against the virus that the host’s immune system has already started. Sometimes the side effects of interferon can be difficult to deal with, and the parents are the ones giving the injections, so that can be trying also. Usually it’s a 9 month to one year treatment time with interferon. The success rates aren’t great, but it offers the best chance there is of completely clearing the virus.
The other treatment option is the antiviral route. These treatments try to slow down viral replication, which in turn would hopefully halt the host’s immune response and stop further liver damage from happening. The antivirals seem to be tolerated well and are easy to administer. They are in pill form. The problem is that Hepatitis B is a survivor virus and it’s whole purpose is replication. When its continued replication is threatened if will often mutate into a resistant form. The mutations are more difficult to treat than the wild-type virus so it’s possible to end antiviral treatment with a stronger virus than what you started with. Although not common, there are also some great success stories with antivirals, so treatment decisions can be stressful.
There tends to be a natural progression of the virus and most people do get to a stage where the virus stops replicating (usually in adulthood). I’ve read that 75% of people with this virus will live a normal lifespan and die of causes unrelated to their Hep B. It is extremely rare to have someone younger than 40 die of complications from Hep B. I recently spoke with one of the nation’s most highly respected pediatric gastroenterologists. She doesn’t even see kids in the immune tolerant stage; she only sees the difficult cases, often referred from other GI’s. Knowing her level of experience, I asked her how many liver transplants she has done on children with Hep B. She said none. I asked her how many cases of liver cancer she’s diagnosed in children with Hep B. Once again, she said none. Life-threatening complications in the first two decades of life are possible, but very highly unlikely. Healthy lifestyle choices also play into the mix. Alcohol abuse is dangerous for anyone’s liver but it can be deadly for someone with an already compromised liver. There is also some evidence to suggest that men have a harder time with this virus than women. I read one study that said the lifetime chance of a female dying of Hep B related liver disease was 15% and for a male it was 40%.
With Hep B there are some disclosure issues that need to be thought about. Some people are very open about their child’s Hep B and have had positive experiences that way, others have found that there is a great deal of fear regarding Hep B and they’ve decided not to disclose at all. Thankfully there is a Hep B immunization. Anyone living with a Hep B positive individual should have their titres checked to insure immunity. The virus is spread through blood to blood contact and not casual contact, but it’s still important to take reasonable precautions. Home situations are easier than situations out in the community. In the United States the Hep B immunization series is required for school attendance, but some parents opt out of immunizing their children. Most adults have not been immunized. Mei’s doctors have told me that she has no restrictions and can participate in all normal childhood activities. It’s not always easy, but every parent of a child with an infectious disease needs to find a balance between protecting others but also protecting their child’s privacy.
In our personal experience, Maya is a delight in every way. She adjusted to our family so quickly and easily. She is very verbal, smart as a whip, coordinated, strong, funny, and just an all-around great kid. I can’t say that there haven’t been moments of stress with her Hep B, but overall it has been an extremely easy special need. Maya is not the typical case and came home at 11 months already in the immune clearance stage. I hoped and prayed that she would be one of the lucky few to clear the virus on her own. After nearly 2 years at home, and despite her immune system’s fight, she still has a viral load in the billions. She’s scheduled for her first liver biopsy this month and we’ll make decisions based on what they find. Even when her liver enzyme numbers were at their worst, she felt great. There really are no symptoms in these children. It’s called the “silent” disease because a person can literally have it for decades without even a hint that anything is wrong.
It seems that people who share opinions on Hep B often either scare families into believing that it’s a death sentence for their children or they describe it as some itty bitty bug that’s no more of a handicap than wearing glasses. I feel frustrated with both of these camps. The odds truly are with these children that they will live long healthy lives, but I also respect the seriousness of the virus. Liver cancer is the most common cancer in China and it’s because of the predominance of Hep B.
At nearly 3 years old, Maya is living a wonderful life. She does know that she gets blood tests more often than her siblings, but she is happy and healthy and thriving. Her possibilities for the future are limitless. In China that would not have been the case. If her orphan status wasn’t already enough to put a cramp on her future, her Hep B status was an even bigger blow. One would think that with such a huge percentage of the population positive for this virus, that there would be a great deal of acceptance. That is absolutely not the case. Some provinces require a clean blood test even before a child enters elementary school. Just a few years ago, a man committed suicide on the steps of a government building in Beijing. In his hand was a letter stating how his life had been ruined after he tested positive for Hep B. He lost his job, his family, and his hope for the future. China is trying to make the lives of those with Hep B better, but the wheels are turning slowly and the stigma is strong. I am so thankful that Maya is not stigmatized by her Hep B and that she can live a normal life.
Since there is an effective immunization, Maya can marry someday and her husband can be protected from the virus. Her Hep. B shouldn’t keep her from having normal pregnancies and her babies have an excellent chance of being free from the virus if they receive a series of injections right after birth. She can enjoy all that life offers.
I was recently at the grocery store with Maya, and as usual, she was being her charming little self. She was chatting away with an elderly woman who was behind us in line and the woman leaned toward me and whispered, “How did you ever get so lucky to be this little girl’s mommy?” I agreed wholeheartedly with her that we are indeed incredibly lucky. I also thought that this woman would be surprised to know that there were not crowds of people waiting to adopt Maya. Agencies often have a difficult time finding families for their Hep B kids and so many of their files have been returned to CCAA. What a tragedy for the children. What a loss for the families.
I sincerely hope that in the near future there will be advances in the treatment and management of Hep B. Research into Hep C and HIV may produce medications that also are effective with Hep B. Last year I attended a Hepatitis B conference held in Philadelphia. We toured the research facility of the Hepatitis B Foundation and I fervently thanked a doctor who was working there alone in his lab doing Hep B research on a beautiful Sunday morning. There are people who are passionate about finding a cure and I pray that someday they will be successful.
I would adopt another Hep B child again. I feel confident that the odds are with my daughter and that with consistent monitoring we can keep her healthy. I’ll never forget that wonderful morning when I saw Maya’s picture for the first time. We knew her and loved her instantly. The virus that she carries is not her in any way. She is her own perfectly made spirit and we thank our Heavenly Father daily that she is a part of our family.