Confessions of a Germaphobe

There are many of us out there, but there are more of you. We blend in with everyone else at first. No one knows who we are most of the time. In general you make fun of us but we know you don’t understand what made us who we are. Often you annoy us, and at times we secretly hate you for ignoring a cough, a runny nose or low-grade fever. We go unnoticed until that day when you see us wipe down a table with a medicated or Clorox wipe, whip out the purell before and after a playdate or leave a park if we see a suspiciously pale child with a nasty sounding cough. You know who we are, and unless we explain how we got to be this way, you think we are a joke. We are “germaphobes”.

I did not intend to be a germaphobe. Before I had my first child I read a lot of parenting articles on how it is beneficial for children to get sick. That they build up a stronger immune system, and that the more sick one is as a child, the healthier one is as an adult.

I read about how more and more children are getting allergies and asthma from our environment being “too clean”. Years ago, when our immune systems had a lot to fight off, we were healthier people. Now that our bodies have nothing in our environment to fend off, the body turns on itself, which is better known as an allergic reaction.

Before I had my first child I scoffed at the germaphobes I encountered. I felt they had no idea how crazy they appeared not allowing their babies to put things in their mouths, or play with other children, or go to places like “Gymboree” or a “Y” class. I vowed not to be like that.

Fate had other ideas.

When I was pregnant with my first child I got sick and developed pneumonia. The illness coupled with pregnancy hormones “triggered” a recurrence of asthma. I had asthma as a young child, but by age ten had completely “outgrown it”. I was forty weeks pregnant, and expected to deliver any minute. Because the baby was already full term, I was put on a course of antibiotics and steroids to combat the pneumonia and asthma. I could not breathe. It was terrifying. I had been going to a birthing center, and was told I was not going to make their protocol. I was being scheduled for a caesarean section with a doctor I had never met. I was so sick the surgery was delayed. I was frantic about what all the medications were going to do to my unborn child, but was told that it would be fine. However, the albuterol used for my asthma is also a drug used in a pre-term situation to prevent the onset of labor. The albuterol caused me to go two full weeks post-date with my pregnancy. The placenta was breaking down, the baby was losing weight in utereo, and she was in danger. I was one day away from a scheduled c-section. I bid a tearful goodbye to the birthing center and my midwives. I felt so betrayed by my body.

A sure-fire way to get me to do something is to tell me I can’t do it. Once I was told I could not have a natural birth, I stopped using my inhaler and had my baby at the birthing center hours before my scheduled section. As soon as my daughter was born, the asthma disappeared. After I gave birth it was clear to me, even if no one else agreed, that my daughter did not look right. She was dry, cracked and terribly skinny. She was nearly twenty inches long, but only weighed six pounds. Her umbilical cord was short and thin. She looked just like a mummy.

I breast fed her, was a stay at home mom, and due to her January birth, we were rarely in contact with anyone but our newborn group. My daughter was gaining weight, but still seemed so tiny next to all the other babies. Around four months of age she got her first ear infection. Then another. And another. Then she began to get sinus infections and high fevers. I felt my baby was always sick. Around age seven months she got her first (of many) case of croup. We were constantly in the Emergency Room of doctor’s office for croup, ear infections and high fevers. My baby seemed to be on a steady stream of antibiotics, only to finish one course and have to begin another. I was getting extremely frustrated with the pediatrician, so easy to dispense antibiotics while dismissing my concerns as a lunatic “first time” mom. “Kids get sick”, she would say. I retorted, “Yeah, but this much? Doesn’t this seem excessive?” I went through four pediatricians before I found a practice that seemed more able to dialog with me about my daughter’s illnesses.

Only one doctor in the practice took my insurance, but he and I were not very compatible. When my daughter was eight months I developed ductal breast yeast. It was the most painful experience of my entire life, bar none. Clearly my daughter had thrush, but she was symptom free. As soon as I cleared up my yeast problem, it came roaring back. Finally a breast specialist said “Even if your daughter seems to have no symptoms, she must have yeast somewhere, because she is more than likely the cause of transmission. We have to treat her for thrush too.” We battled yeast together, my daughter and I for two years.

I felt I was constantly in the pediatrician’s office, and my daughter began to develop more and more illnesses—some I had never heard of. I started to worry about germ exposure, and began to question people before they came over or before we went to their home “Any runny noses? Any coughs? Anyone sick?” I knew I was getting on everyone’s nerves, but my own nerves were shot with my constant trips to the pediatrician’s office or Emergency Room.

Finally when my daughter was ten-months-old I lost all patience with the pediatrician. She had stopped gaining weight, and she had been refusing all solid foods. I started to scream at him that he was not helping her, and that I knew, felt deep down inside, that there was something wrong with her. He sighed. He was just as frustrated with me, but all he said was “Ok, she is ten-months-old now, let’s see how this month goes. If she gets sick this month, we’ll have her tested.” During that month she came down with Roseola, strep throat, herpangina (full blown coxsakie virus), bronchitis, an ear infection, and a sinus infection. Clearly the month had not gone well. The pediatrician suggested I see his partner, an osteopathic pediatrician who was a former pediatric oncologist. As a former pediatric oncologist, he had an idea my daughter had a Primary Immunodeficiency Disease. Sure enough, after her battery of tests, she tested positive for an IgG subclass deficiency.

And so with her diagnosis of IgG deficiency, I was on my way to full-blown germaphobia.

Knowing was half the battle, or so I hoped. Unfortunately in the case of an Immunodeficiency, the illness happens, the hospital visit happens, the bad things happen whether or not you can put a name to the disorder.

When you have a child with Immunodeficiency, the first thing that you ask is, “Will he/she outgrow it?” You dread the answer, because there’s a chance, a big chance, the answer is “No.” In our case, we were told, “Well, there are three possibilities. She’ll get worse, she’ll get better, or she’ll stay the same.” In pushing for more details, you ask, “What does the ‘get worse’ possibility mean?” Apparently, it means, your child can just get sicker and sicker, and possibly die before age 18. No matter what else is said, you always have in the back of your mind, “can get sicker and sicker and possibly die before age 18.” And when you see kids with runny noses, coughs, or hear moms say, “He threw up all night, but seemed fine this morning so we brought him to the class.” You have this completely irrational desire (even though it is brought about by very real fears and medical truths) to punch them in the head and scream at them that they are making your life miserable. Of course THEY aren’t making your life miserable, but you want to blame someone for the hell that comes with every new illness your child contracts. Additionally, when your child has an immune disorder, they are not able to build immunity, so they can get the same virus’ again and again and again. They can’t be vaccinated, because they can’t develop the antibodies. So, you worry that in addition to all the “regular” diseases out there, your child will contract something that “normal” kids are vaccinated against.

When my daughter was three, we left the New York Metro Area, and moved to Massachusetts. Coincidentally (or maybe not?) she got better. Every six months when we had her immunoglobulins tested, she was showing more and more signs of developing a satisfactory level of IgG. By age 8, she was completely within normal range. When she gets sick, she can still get “more”sick than typical children who never had an immune disorder, but for the most part, she has become a “regular” kid. But the damage was done. I live in dire fear of illnesses, germs, and the potential of one of my children getting deathly ill. I had two more children, both of whom (thankfully) do not have immune disorders. Even so, when any child in the house is sick, I go to a dark place. I hate it. I go to insane degrees to keep them “safe” from germs. I am still paranoid about being around sick people, or recently sick people. For years, I carried around a prescription of a rare antibiotic my daughter had to take for a particularly rare disease she had when she was 2 years old. The prescription was for a refill, should we need it, and happily, we didn’t. But I kept that prescription in my wallet for years and years. It was tattered, most of the writing had rubbed off, and it had become almost lint-like. Somehow though, I believed, or wanted to believe, that having it in my wallet was like a Talisman. Guarding against the worst case scenarios, protecting my child like an ancestral totem.

My daughter will be ten on her next birthday. Ten. Double digits. A decade. I feel a sense of pride in that. Although images of my sick child in a hospital bed with a 106.5 fever still haunt me, I eventually threw away the Talisman. It was difficult, and I sat with the soft, nearly disintegrated, paper in my hand for a long time. I had a tough time letting go of the idea that my daughter would get sick if I threw it away. But I did. Because sometimes, we have to do that—throw things away. Generally our fears and ideas are the most difficult to throw away—and often, the most necessary. So, when you see, or hear, or read about a mom who is a control freak germaphobe, remember that everyone has a reason for their actions. Even if you think it’s crazy or bizarre, know that there is probably a traumatic history behind it. And just for good measure, pass the Purell.

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