The Immunization Decision

Like many parents, I suspect, I never seriously considered not immunizing my children. I made the routine well-baby appointments recommended on the chart I was given at the hospital when my first child was born and skimmed the literature that explained the possible immunization side effects and reactions. And like most kids, my first child tolerated immunizations well. My second child, Elena, also had no trouble tolerating her first two rounds of routine immunizations.

Hours after Elena's six-month DPT booster, however, I began to wonder what I had subjected her to and why I had paid only passing attention to the immunization booklet the nurse handed me earlier that day. As described in the pamphlet, which I had frantically retrieved from the bottom of the diaper bag, Elena cried an unusual, inconsolable wail for hours that afternoon. Although she eventually fell into an exhausted sleep, she awoke in the middle of the night crying a strange, punctuated cry unlike anything I had heard before. My husband rushed to her room and found she was having convulsions and was crying between spasms. The convulsions lasted for a few terrifying minutes, but once they were over Elena fell immediately back to sleep. We were uncertain what we had just witnessed, but in our 3 a.m. fog, we decided she was out of danger, so we tried, not completely successfully, to go back to sleep, too.

Elena was fine the next day. Our family doctor assured us that these reactions occur one time in a million, but that maybe we should consider omitting the pertussis component of the fifteen-month DPT booster. We didn't know then that the DPT reaction was the precursor to a seizure disorder which in the next few years was difficult to control. Between that six-month immunization and her third birthday, Elena had ten seizures, was under the care of two different neurologists, had multiple EEGs and MRIs, and took daily anti-seizure medication. Her neurologists are confident that the pertussis immunization did not cause the seizure disorder. But as a parent who experienced the DPT reaction firsthand, I'm not as sure. The immunization undoubtedly caused the first seizure and did violence to her tiny body. I can't help continuing to wonder if it set off the entire course of seizures.

So, terrified that another pertussis immunization would cause another seizure, and following the advice of our family doctor, we decided to forego the pertussis component of Elena's fifteen-month DPT booster.

Then, during the spring when she was two and a half, Elena began to cough. She coughed and she coughed, especially at night, often vomiting and choking on mucous. During coughing spells, she was frighteningly unable to catch her breath. After more than two months of Elena's excruciating coughing, choking, and vomiting, with multiple trips to the family doctor, numerous X-rays and courses of antibiotics, and little sleep for any of us, a pediatric pulmonologist diagnosed Elena's pertussis. There is no effective treatment for pertussis, also known as the one-hundred-day cough. A course of antibiotics makes the patient uncontagious, but does not affect the symptoms. So Elena just had to cough it out. Fortunately, my husband and I both work flexible schedules and were able to devote the necessary time and energy over the summer to taking care of Elena without compromising our jobs. But the summer was exhausting, and had we not had excellent health insurance, it would have been very expensive. I also carry the burden of knowing she infected a teenage baby sitter and possibly other members of our fairly small community.

As a result of the pertussis, however, Elena sustained airway damage which results in a severe asthmatic episode every time she has a minor virus. We administer two different preventive medications with a nebulizer twice a day. When she has a virus, we administer an additional medication every two to three hours around the clock to keep her airways open so she doesn't turn blue.

So which was worse? Over the last two years, I have asked myself many times what I would have done had I known the outcome of that six-month pertussis immunization and also known the outcome of deciding to forego the pertussis immunization. But it's a ridiculous dilemma. How can I possibly weigh which was worse for my daughter and our family? Pertussis is a terrible disease that can compromise a child's health and activity for years, in addition to draining a family's energy and finances. On the other hand, having even one seizure is not an experience I would wish on any child. And witnessing your child having a seizure, or ten seizures, is not an experience I would wish on any parent.

Of course, we can never know in advance what the result of our choices will be. But parents must educate themselves about immunizations so they are actually making a choice and committing themselves to the possible consequences of their choice. Parents must realize that diseases like pertussis are dangerous, present, and very contractible, even in the United States. A decision not to immunize should not be made lightly or made purely as a reaction to the sometimes invasive, sometimes seemingly insensitive or overly scientific medical establishment. A parent who decides not to immunize should be prepared to devote the time, money, and emotional and physical energy necessary to nursing a child through a serious illness. Similarly, parents must realize before immunizing their children that immunization reactions do occur, can be terrifying, and may have lasting effects on a child's health.

Fortunately, in between the asthma episodes and despite the seizures and anti-epileptic medications, Elena is a remarkably healthy, active, and energetic girl. We are hopeful that she will outgrow both the asthma and the seizures. But making decisions about my children's health, especially about immunizations, has become more difficult, because I realize that the easiest, most obvious decisions are not always the right ones. Only when I have made an informed, considered decision can I feel truly confident that I have done the best I can for my children.

Mary Dunnewold lives in Northfield, Minnesota. This is her first contribution to Minnesota Parent.

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