Bad Genes

Bad Genes

Last year, my then-four-year-old son had a terrible cold/flu season that extended through May. In the course of six months, he had a stomach virus, strep throat, various colds, three ear infections, and two different strains of flu. Having a child who was sick so often would be hard for anyone, as he was miserable, he missed a lot of school, and I had to miss a lot of work and had many sleepless nights taking his temperature and dispensing medication. However, because he’s my son, an additional concern burned in my brain.

Is his immune system okay?

As a person with rheumatoid arthritis/rheumatoid disease (RA/RD), I know what it’s like not to be able to count on my immune system. Instead of focusing its firepower solely on germs and viruses, my immune system gets confused and attacks my joints (tendons, muscles, and organs are potential targets as well). My immune system, designed to keep me healthy, actually causes damage and pain to my body.

Having a malfunctioning immune system, I faced a challenging decision of whether to have biological children. As my husband and I decided whether to attempt pregnancy or adoption, I weighed the potential risks of pregnancy and stopping my biologic drugs, the physical demands of caring for a baby, and the possibility of passing on my genetics to my children.

While researchers are still far from a full understanding of the causes of RA/RD, it has been determined that genetics are one causal component. Studies have shown that an individual is up to three times more likely to develop RA/RD when a first-degree relative (parent, sibling, child) also has the disease.1 Furthermore, when a family member has an autoimmune disease, his/her close relatives are more likely to develop an autoimmune disease, though not necessarily the same one.2 Therefore, given that I have multiple autoimmune conditions, as do my sister and my mom, deciding whether to have biological children required a lot of consideration.

I did choose to become pregnant, and now that my children are here I can’t imagine the world without them. I do not regret my decision for a moment, and I am so grateful they exist. However, that doesn’t fend off the guilt and worry that creep in whenever either of my children has health problems.

Unfortunately, this cold and flu season was nearly as bad for my son as last year’s, with two rounds of strep, a stomach bug, two ear infections, and the flu. As I worry, I also remind myself, “Five-year-olds get sick.” Of course, everyone gets sick once in a while, but any kindergarten teacher will tell you that five-year-olds get ill more frequently than most. I keep this in mind each time my son gets sick, and his pediatrician reminds me of this when I ask if I need to be concerned about his immune system. And yet, the worry persists.

The pediatrician does keep the family history of autoimmune disease on his radar as well, and he has said he would be more concerned if my son’s frequent illnesses weren’t the run of the mill sicknesses that five-year-olds tend to get. The fact that he isn’t picking up rare infections is reassuring to the doctor, and I try to let this reassure me as well.

Still, I worry.

When I shared my concerns with my aunt, she told me not to worry. I responded that I don’t know how not to. Yes, it is true that kids get sick. Everyone knows that. However, I also know some things that many people don’t: I know what it’s like to grow up with a sister with Type I Diabetes who was frequently hospitalized; I know what it’s like to be a child with chronic, undiagnosed symptoms; I know what it’s like to be diagnosed with a degenerative, autoimmune disease without a cure. In my family of origin, when it came to health problems the worst case scenario often came to bear. Therefore, I don’t know how to assume that all will be well.

I spoke to a therapist about my concerns. He validated that yes, I do know what the worst case scenario looks like. However, understanding that is a possible reality doesn’t mean it will become our reality. The statistics about the genetic propensity for autoimmune disease does mean that I should be vigilant about my children’s health, tracking symptoms and illnesses and consulting doctors when I’m concerned. All the while, I must balance this with what doctors share with me, that so far they don’t see evidence of an autoimmune condition. I must balance the worry with hope, as no one, including myself as a mother, can be sure of what the future will bring.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The RheumatoidArthritis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.
View References
  1. https://www.nras.org.uk/the-genetics-of-rheumatoid-arthritis
  2. https://bmcmedicine.biomedcentral.com/articles/10.1186/1741-7015-11-73

Comments

View Comments (11)
  • Mary Sophia Hawks moderator
    8 months ago

    Thank you for bringing this subject up. I had my children before I was diagnosed with fibromyalgia and then RA. My oldest son tends to have joint pain, but he has grown so fast that I am waiting before I sound the alarm. Please know that you are not alone in your concerns. You and your family are in my prayers.
    MSH

  • Tamara Haag moderator author
    8 months ago

    Thank you, c7mv96, for your comments! I hope that your son does indeed just have growing pains, and that you are doing as well as possible with your double-diagnosis. I wish you all the best! Gentle hugs, Tamara

  • rockcandi
    8 months ago

    Thank you very much Tamara for sharing! I went through the debating too. We’d lost two babies; we were 19 when I had an early miscarriage and 21 when we lost our daughter to a serious congenital heart (birth) defect. In our early 30s I’d begun debating whether to try again, afraid of losing another baby, & concerned about passing on Lupus, JRA, &/or autism. (My uncle has severe autism and two other family members have ASD.) I was also extremely anxious about whether I’d be able to care for a newborn and infant when there have been times I could barely take care of myself. I don’t have family here and my husbands family wouldn’t have been able to provide the type of help I’d had needed had I had a major flare like 2 in the past. God took the decision out of our hands when I was 34 (or 33, I can’t remember and can’t do math right now) and I unexpectedly became pregnant with our son over two years ago. He’d been very healthy up until a month and a half ago, except for severe acid reflux, constipation, & diarrhea. Then one morning he climbed from our bed to the chair beside it then the floor but immediately upon standing he couldn’t put weight on his foot/ankle. We, my husband, & all the doctors, think that he probably twisted his ankle on the chair (I was looking at his arms so I didn’t see) causing a sprain and/or break in his fibula, the bone that runs along outside of ankle. BUT, bc of my JRA and fact I didn’t see it happen, and bc he couldn’t see a break on the X-ray as two year olds have soft tissue, not a bone yet in the fibula area, there is concern that he simply woke up that way. That’s what happened with me. I didn’t injure it but woke up to a swollen knee on which I was unable to bear weight. He also had high unexplained fevers beginning the following night and lasting for 4 days. He has an appointment in 5 days and as strange as it sounds, I’m praying the X-ray shows a healing/healed fracture. By the time we go for the X-rays and appointment, the orthopedic doctor said that if it was broken we will be able to definitively see a healing or healed fracture. Oh this disease is so crazy! Just like I want blood work and physical inflammation to show evidence of the pain and symptoms I’ve been having anytime I go to the rheumatologist, I want my son to have broken his leg bc it will mean that his pain and swelling had a concrete cause and isn’t the first unwelcome sign of JRA.

  • Tamara Haag moderator author
    8 months ago

    Hey Rockcandi,

    Thank you so much for sharing these difficult experiences. My heart goes out to you for the loss of your two babies, as I know that grief stays with you always. My heart also goes out to you for your current worry about you son. I can completely relate to everything you’ve said, and it is a testament to the profound impact this disease has on our lives that a toddler’s broken bone can actually be welcome news. I would definitely take a broken bone over an RA diagnosis any day!

    I will be thinking of you as you await more answers, and I will be hoping for the best possible news.

    Wishing you and your son all the best,
    Tamara

  • rockcandi
    8 months ago

    Thank you Tamara. It is so crazy to be wishing for his bone to have broken but that’s exactly why: I’ll take him having a broken bone over him having JRA/RA! I will definitely update you after we go on Tuesday.

  • Tamara Haag moderator author
    8 months ago

    p.s. Please update us if you feel so inclined!

  • CynthiaV
    8 months ago

    With modern medical technology and awareness of potential disease causality I can imagine that your decision to bear biological children was difficult. I know this is going to sound terribly backward and old fashioned but sometimes life was simpler when we knew less. Ofc, I am incredibly thankful for the strides made in RA research and the creation of biologics but along with these advances comes the knowledge that causes us to question motherhood, fatherhood and other intimately personal decisions that our parents and grandparents never had to face.

    I applaud you for soul searching as to the “fairness” of bearing children but I applaud you equally for your decision to have your children. As you shared, you cannot imagine life without them but less selfishly you acknowledge the future to them you may have passed on.

    As difficult as this reality is I believe your choice to bring forth life is unselfish. Existence trumps non-existence for countless reasons. And who is to say that despite a possibility of active disease your children are not the very ones who might one day turn this whole mess of RA or Diabetes or any number of diseases on their ear?! There is always hope.

    As speaking as one who was unable to have children due to immune disease treatments I envy you your dilemma. I know by your writings you are an excellent mother, not perfect but always trying to be. Your children are blessed indeed to have such a mother, and father who weighed the risk and still dared to take it. Brava Tamara. Keep fighting the good fight!

  • Tamara Haag moderator author
    8 months ago

    Oh Cynthia, I have tears in my eyes after reading your kind words! Thank you so much for sharing them! There are so many different perspectives on these matters, and while all may be valid, yours feels so very helpful. Thank you for taking the time to share your perspective. I deeply appreciate it. With gratitude, Tamara

  • CynthiaV
    8 months ago
  • Lawrence 'rick' Phillips
    8 months ago

    When Sheryl and I were dating I was absolute in my belief that I never wanted to have children. I saw the ravages of diabetes and as a recently diagnosed T1, I just could not imagine being a father.

    We got married and we decided after a few months that we would have children. I worried every day about them so I understand the feelings you describe.

    What I have found out over the last 41 years is to take the good and understand that we are simply not in control of things like a chronic disease. Today our sons are nearing 40 and diabetes free.

    Was I worried? Yes. Do I regret the one minute of having them, never. What woudl have happened if they ended up with diabetes? Today I would be OK. Because there is no way I have control over something like that. No more than my parents had control over my diabetes.

  • Tamara Haag moderator author
    8 months ago

    Thank you for these helpful words, Rick, and for sharing your personal experience. I appreciate your perspective from “the other side” of parenting, with your children fully into adulthood, so very much. All the best, Tamara

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