Sonia Green family

They say it takes a village to raise a child. For mom Sonia Green, the global village of parents is helping her protect her children every time they get their kids vaccinated. That's because three of Green's four sons aren't vaccinated.

They can't be. All sufferers of an immune deficiency called x-linked agammaglobulinemia, a rare condition that affects approximately one in 200,000 newborns, Harrison, Holden, and Davis Green's bodies can't produce antibodies to disease, rendering vaccines ineffective and sometimes downright dangerous.

But when other kids are vaccinated, their mom says it helps create what's known as a "herd immunity," a sort of security blanket of health for kids like the Green brothers. It's why the law professor is a fierce advocate for the very immunizations that her kids can't get.

Sonia Green spoke with The Stir about 15-year-old Harrison, 11-year-old twins Holden and Langford (the latter of whom does not have the condition), and 9-year-old Davis, and why it is she thinks the burden should be on the community to keep all kids safe:

How were the boys diagnosed with an immunodeficiency?
By the time Harrison was 18 months old, he’d had several ear infections (and had tubes), a number of colds, and had also had a pseudomonas infection in his lip, and a staph infection. He also often got little irritating coughs. We’d tried various doctors and finally sought out an immunologist at Children’s Memorial in Chicago, thinking that maybe it was allergies. It turned out that not only was his body not overproducing the immunoglobulins that cause allergies, it was actually very deficient in those antibodies.

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The allergist sent us to the immunologist, and he confirmed that Harrison’s body basically does not make mature B cells, which are responsible for immune system memory. Since this condition is usually genetic, the immunologist tested Harrison and tested me to see if I was a carrier. I am.

What about your younger sons?
Knowing that I am a carrier, we tried to conceive our twins using IVF with preimplanation genetic diagnosis. We were trying to avoid having more kids with this condition. We worked with an amazing embryologist in Michigan -- very high tech: a cell from all the embryos was courriered from Chicago to Michigan -- but his tests failed to disclose which embryos has the particular genetic abnormality.

However, he thought he’d be able to test the embryos for gender and only put in female embryos. This condition is x-linked, which means that in order to manifest it, the person has to be XY (thus, a boy) and have inherited my X chromosome with the defect (so a 50/50 chance for every boy). Girls who have an affected X, like me, do not have the condition, but are carriers. Anyway, the testing went awry somewhere, and we ended up with two boys. When the amnio disclosed that I was carrying males, we had in utero testing done and found out that twin A had the condition. This was confirmed at birth.

And your youngest?
When the twins were 6 months old, I got pregnant surprisingly and amazingly the old-fashioned way, and we had our youngest. With Davis, the in utero testing was inconclusive, but he was tested and diagnosed at birth.

What does XLA do to their bodies?
XLA basically means that their bodies do not make mature B cells. B cells and T cells together regulate our immune systems: kids with more severe primary immune disease (PID) like those with severe combined immunodeficiency (SCID, or “Bubble Boy syndrome”) don’t have T cells or B cells, and thus have no working immune system. My boys have working T cells, which means they can fend off some viruses. Without B cells, however, they do not produce any immunoglobulins, which means several things if they are untreated. Their bodies have no immune system memory, so if they contract something, their body won’t mount an immune response and won’t “remember” to mount that response again, so they could get the same thing many times.

How is it treated?
They take a daily antibiotic -- Harrison, for example, is on Cipro, which is pretty hard hitting -- as a prophylactic to keep them from getting sick. They also get an infusion of a medicine called intravenous immunoglobulin (IVIG) to give them a temporary, partial borrowed immune system. This gets depleted, so they need to rebuild it every 28 days. There is no cure for their condition that is safe and effective, so this is what they will have the rest of their lives, unless things change.

Even with treatment, they are not at 100 percent. They are still more susceptible to certain viral infections like meningitis, and the risk of a viral infection becoming severe is much higher for them than those with normal working immune systems.

What's your biggest fear as a mom?
Meningitis. Viral meningitis. Other viral conditions against which my boys cannot be protected even with their medicines. Also, any unusual bacterial infections that reoccur in the populace. The boys’ IVIG medicine is made from blood plasma of healthy, immunized adults and protects them to those limits. If anything pops up anew or again in the populace, my boys won’t be protected. I’m also worried that people won’t be honest about whether their kids are vaccinated, and that there will be some outbreak in my community.

How does XLA affect your own sons' ability to be vaccinated?
At best, the vaccine would do nothing, since the vaccine works because the body remembers the intruder and mounts a response of that intruder strikes again. Without a memory like this, the boys’ bodies would do nothing. At worst, the vaccine could actually make them sick, especially if it were a live vaccine.

How do you handle encountering unvaccinated kids?
I have not personally met someone who admits that their kids are not vaccinated. If I did, I would plead my case in person, and would be very clear that my kids could NOT associate with those kids. I will fight for my boys, and would not be afraid to take this to an extreme: not associating would mean no playdates, no “hanging out” together at recess, but even more than that.

I would ask that the school not put that kid in my boys’ classrooms (not even that of my “healthy” son, since he could become a carrier) or allow those kids to have lunch in the same lunch room as my boys. I would tell the boys’ soccer clubs, band, drama clubs, etc., that my boys cannot be with an unvaccinated child and would put the burden on them to basically exile the unvaccinated child. I believe that societally, there has to be a cost to putting others at risk, and I think that my community would be supportive.

So, your boys go to school. What was the decision like to send them to school, where they could encounter unvaccinated kids?
My boys all attend our local public schools. Davis has just moved up to middle school (starts in 5th grade for us) and the twins are in sixth grade there. The middle school has about 500 kids. Harrison is at our public high school which has about 3,200 kids.

I have to say that it was all much easier when they were in tiny Montessori schools (through first grade) where we knew all the families. We did not consider homeschooling them because our doctor never recommended it, and because we really believe in the importance of social interaction, but we did think about smaller, private schools. Ultimately, though, we went with public schools because we are still in a small (up to high school at least) community with excellent schools, and the district does take vaccinations seriously. If we lived in a state where it was easier to opt out (Illinois requires medical reasons), we might have had to make different decisions.

What is the response from the school when you make requests about unvaccinated kids being kept away from them?
Incredibly responsive. Again, it helps that the elementary and middle schools are small, and near our home, and we know the nurses, principals and even the school board superintendent. The high school has been a little less responsive, but I think that schools these days are pretty well set up to handle so many different medical issues that they do have a good system in place.

What's it like sending your kids to do things where they might encounter sick kids?
It’s scary as hell. It has gotten less scary with every passing year that I see them staying healthy, but for my comfort level, I need status quo -- lots of vaccinations -- or better. When I hear that there are trends AGAINST vaccination, I’m back to where I was with a 3-year-old Harrison, wondering every day what bug he could catch at school.

As a family, we’ve definitely had to make choices on how to live our life and who to trust. We are incredibly lucky to have an immunologist whom we trust 100 percent. If she says it’s OK for them to go to school, then that’s what we have to do. It’s definitely a struggle for me to let go, but I have to do what’s best for them. So, we’ve never let them feel like they are sick or “different.” We need for them to stay healthy, but we also really want for them to grow up feeling confident.

Have you ever noticed a sick kid around your kids and had to spring into action? What happened?
It’s funny, but this actually makes me thing of all the times I DIDN’T spring into action and wish I had. Before Harrison was diagnosed, we let him play with a girl who was obviously sick, and he got her cold, just much much worse. Even post diagnoses, there have been some times when I’d let it slide, and of course I remember the ones when I did, and my boys got sick.

When the boys were younger, I would sometimes call a parent and ask that a playdate end early if I saw that a kid was sick. I have asked to move away from people in restaurants and move theaters if they are visibly sick. Once, I asked parents on my boys’ soccer team to let their kid stay home from practice because he was coughing a lot. But, a lot of times I let it go. If I know that a kid has been coughing for a while and is no longer contagious, I’ll let him play with my kids. A lot of parents are also very good about clearing things with us.

Now that the boys are getting older and making plans for themselves, I have to trust them to know when to leave someone’s house or not hang out with a friend if they see that the friend is sick. It’s tough, but they have to learn.

Why do you advocate for other kids to be vaccinated when yours can't be?
I know -- through research -- and believe that vaccines prevent disease. I want everyone to be as healthy as possible, so I advocate for vaccines. Very selfishly though, I also ask that other kids be vaccinated EVEN IF the value to them is nil because it DOES help my kids. A kid who would or wouldn’t contract a condition -- or contract it, but not have it be serious -- regardless of vaccination might not benefit from a vaccine. But, if that same kid contracts something that doesn’t hurt HIM, he is now a carrier and could easily pass it along to one of MY boys, on whom it would have a much worse effect.

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My boys are essentially magnets for these conditions, so they are likelier to get them if anyone is a carrier, AND, if they do get them, they are much, much likelier to be very serious and potentially fatal. We rely on herd immunity 100 percent to keep my boys healthy. We have so many friends in the primary immune disease community, and I think there are many others who are not diagnosed. These people -- and others who are immunocompromised, like infants, and chemo patients -- need herd immunity to stay healthy.

Herd immunity is pretty important to your family! What do you say to parents who say it's not their responsibility to keep your kid safe?
Best case scenario is when I can explain in person that I am NOT asking the parent to take the primary role, but just to help the many things we do to keep our kids safe. I try to make it clear that if it costs them nothing, then it’s worth doing the good thing. It’s tougher when they place a strong negative cost to vaccinating, but I try to dispel that. I am not asking for anyone to do anything that’s not also in their own kids’ best interest. If they are already vaccinating, then they feel better, I think, knowing that they’re not just protecting their kids but also keeping my kids safe. If they are on the fence, and aren’t convinced that their kid needs vaccines, then sometimes hearing that it could help someone else puts them over the edge.

I try to make the analogy to putting seat belts on other kids: every parent I know will buckle a guest child before her own if she ends up with more kids than seat belts in the car. I make the analogy to how we all watch extra carefully for kids on crosswalks around schools, and how, as a community, we DO protect each other, and each other’s kids all the time. To me, this is nothing new or different.

I did see a very hateful comment in response to an interview about how “deficients” shouldn’t use up public resources. There’s nothing I can say to that. Someone who thinks along those lines isn’t someone I’m going to convince, and hopefully I would spot someone that hateful in person and just stay away.

I think that many people don’t really think about herd immunity these days, and it’s great that we’ve come this far, but I feel like I need to keep us from become too complacent about it.

How does herd immunity affect your decision to vaccinate (or not) your own kids?

 

Image via Sonia Green