Of Parenting and Pertussis: Bedside Lessons

feeling betterBy Jana
As we drove to the Emergency Room I could only focus on my son, strapped into the carseat next to me. I hovered over him, watching his blue-tinged lips, seeing his chest heave high with each breath. What can a mother know, what can a mother think, in such circumstances? I could only breathe alongside him, hold his hand, pray that my husband could weave through rush-hour traffic and get us there quickly.

A few hours later he lay in a too-large hospital bed, an IV tube in his head giving much-needed fluids, oxygen flowing through the cannula in his nose, monitors on his feet to check his blood oxygen levels. I stood at his bedside waving a toy above him, breasts heavy with milk that I would need to pump (eventually), when I dared to leave his bedside. He was in isolation because of the nature of the disease. Anyone entering his room first donned gown, gloves, and mask. I alone interacted with him sans precaution. But I already had pertussis myself—had given it to him. I was not in danger.

Our pertussis babies are usually here for a few weeks,” the nurse had said with a hesitant smile. She tried to get me to relax a bit as she showed me how to turn up the oxygen flow during his coughing spells and how to read the monitors to know if the oxygen levels dipped too low. An alarm would sound and the staff would come running, she explained. Within moments the alarms rang and the skilled medical staff inserted a tube into my son’s nose to suction out the phlegm that was choking him, literally sealing his airways. That task accomplished, the monitors assumed their normal hum.

I could only think about how my boy looked so cold and alone. Despite my concerns, I felt security that he would survive. He had cutting-edge medical care and world-class physicians. He had the love and prayers of his parents. He would have me at his side until his release.

There was great irony in that the love showered on my son by extended family members brought this near-fatal disease. Unknown at the time, my parents had both contracted pertussis from the hospital where my father received his cancer treatments. Then they had given it to me during their visit a week after my son’s birth. When I, as a new and fairly naïve parent called my pediatrician and OB to express concern about my worsening cough and my son’s inability to nurse properly due to his coughing spells, they had reassured me that all new parents are too paranoid. It was when I called and insisted that his lips and fingers were taking on a bluish tinge, that they finally scheduled an appointment. And when his doctor then heard the barking rasping cough—the hallmark of pertussis–he sent us quickly to the nearest Children’s Hospital with directions to proceed straight to the Infectious Disease clinic.

he has a pie

Now as I think back on this event I marvel that we survived it so well. My son shows no signs of the brain damage that can result from oxygen deprivation. His mild asthma is perhaps the most persistent evidence of the trauma his young lungs experienced. As I look at this boy who now wears the same size shoes as me, who grows more independent a savvy with each passing day, I wonder if and when my actions might unknowingly bring him harm again. It is the paradox of parenting that we try as hard as we can to protect and to nurture our children and sometimes pertussis happens anyways. We can’t see the invisible threads of cause and effect. We can’t know the end from the beginning. We can only commit to stand at the bedside and be there alongside them—come what may.

This experience was formative for me as a parent. As a result I’ve become a rather vigorous proponent of immunizations (Pertussis is the “P” part of the DTP shots that children typically receive when they are about 2 months old) and I was also highly protective about germs and other dangers when my children were small. I am still a bit paranoid—keeping my kids close and guarding their safety as best I can. Sure I can’t prevent them from all ailments and pains, but I do my best to keep them safe.

I am curious what experiences have contributed to your parenting styles/philosophies? Are there incidents that dramatically shaped your approach to nurturing or caregiving?

**Top photo taken just after his release from the hospital after his bout with pertussis. Bottom photo taken last Spring during a visit to Julian, CA to enjoy some of their famous apple pie.

Jana

Jana is university administrator and History professor. Her soloblog is http://janaremy.com/pilgrimsteps/

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  1. cornnut32 says:

    how terrifying. i was in tears just reading about it. how strong you are as a mother. i don’t know that i could handle a situation like that.

    i don’t think i’ve been a mother long enough to have any dramatic incidents, or i’ve been lucky enough not to. but this post has given me perspective–if (heaven forbid!) something like this comes along, i will be able to deal with it in a more productive way. thank you for that.

  2. gladtobeamom says:

    I have only had one terrifying experience when my daughter at 11 months had a really high fever that would not go away and her white count was so low they thought she had cancer. A week at the the children’s hospital on iv meds and being poked so many times I lost count. We never did find the cause she came through fine but boy what a scare the only words I can think of is a quote from a dear friend who lost her 2 year old daughter.

    “love them unconditionally, pray with them day and night,be and example of what you want them to be, diligently hold your arms around them and spend quality time with your family in the evenings, be consistent, never give up, and never forget who they are!”

  3. E says:

    I am a physician and am so pro-vaccination that I have a hard time dealing with parents who do not vaccinate their children, and prefer not to have them in my practice. I have seen children suffer like yours, and even seen children die of vaccine-preventable disceases. I haven’t been able to overcome the instant anger I feel when parents refuse vaccines, even though I know they are not intending to put their kids at risk.

  4. Azucar says:

    Absolutely.

    I had a very difficult time nursing for the first two weeks after my son was born. It was 2-3 weeks of HELL. I had a doctor give me some VERY bad nursing advice (supplement with formula for jaundice) and that cut my milk supply.

    When my son wasn’t back to his birth weight at his two week appointment, I had to go to the lactation consultants to figure out what was wrong (1. Bad latch 2. Decreased milk supply.) I spent 2 weeks building my supply back up again. That meant pumping with a hospital pump every two hours if the baby hadn’t nursed yet, taping a tube with a syringe at the end to my boob so that the baby would think that food just came from me.

    I was sobbing, I was catatonic, I wanted to give up, it was awful. My husband would come and see me sitting on the sofa at 3:30am crying my heart out because I wanted it to work so badly and not starve my kid. Wanted me to quit and just pump.

    I refused and I’m glad I did, but it wasn’t easy and I was an emotional WRECK.

    My mom gave me the best advice, I wish I’d listened to her at the beginning and saved myself the heartache. She told me the doctor was wrong, she told me that the formula would cut my supply, she told me to stop with the nursing aids and the pumping, and just sit down and nurse my baby. She was right on every count. Go figure, a woman who nursed four kids.

    After the lactation consultant helped us correct our latch, I sat down and nursed the baby. When I listened to the lactation consultant and my mom, things worked out. In fact, we went on to nurse for 2.5 years.

    Here’s how it informed my parenting:
    1. I do not trust doctors when they give out nursing advice.

    2. I learned to trust my instincts.

    3. I had such a rough time nursing, I fought through it and now believe that most women can too.

    4. It has made me a crusader in the cause of nursing our children. So many women get the same bad advice, they don’t have the support, they are sabotaged, and I fight to change that. I don’t know where I’d be if I didn’t have a supportive and knowledgeable mother, because so many women don’t have that kind of backup.

    5. It made me investigate WHY women fail, and the role of formula companies in undermining the desire of most women to nurse. Let’s just say that if I could blow up an industry today, it would be the formula companies.

    So yeah, I had an experience.

  5. courtney says:

    I got pertussis when I was 20– who knew the vaccination wears off by the time you are a teenager?! Experiences like that reinforced my decision to have my children immunized– it is so easy to catch, and I have never been so sick in my life.
    I am so glad your son recovered so well. How absolutely terrifying.

  6. courtney says:

    I just read Azucar’s comment and wanted to add one more thing:
    After I had my daughter I tried and tried to breastfeed. She just would NOT latch on– she wouldn’t even try. But everyone I talked to just told me to keep trying, keep trying, keep trying. I finally realized that it was better for my baby to be formula fed and have an emotionally sound mother than to drink the pumped breast milk from an even-more-sleep-deprived, crying mother. I am so glad I decided to feed my daughter formula and just cut my losses. I will definitely try with my next child, but I could just not handle the emotional stress of trying to breast feed my daughter in addition to my wacky postpartum hormones.

  7. AnaCA says:

    Azucar, this adoptive mom is glad you haven’t blown up the formula companies yet. Nursing is such a loaded topic. Those of us who couldn’t do it for whatever reason already, honestly, feel sort of second-best.

    As far as events that have affected my parenting style or philosophy, I guess what I have learned is that, though I do my best, so many things are out of my control, and yet somehow we bounce back. My kids grew in other women’s wombs. Though I respect their birthmoms, a couple of them had addictions beyond their control. A couple of my kids were exposed to substances I would have done just about anything to keep them away from. But they are in great shape, intelligent and fun and quirky and sweet. It’s a miracle to me.

    The only time one of my kids was hospitalized – it was my oldest; he was 2. We noticed an unusual inflamed area on his belly. As the day progressed it started to bother him more and more until eventually he would not bend at the waist and lay flat on the floor, crying. It was a random bacterial infection in his skin. A colony of bugs just decided to settle there, no bug bite or scratch or anything to get infected, just soft baby belly skin. It was so weird and scary. So out of my control. (We were lucky it had not spread to his abdominal wall; it was controlled overnight with IV antibiotics.)

    I don’t know if there’s much of an overarching theme here. I guess maybe just that I’ve come to feel that my mothering has less to do with *me* than I might like to believe. I have a role to play, of course. But I don’t have the same sense of destiny that some people seem to have about their families. I don’t think we were together before this life. My husband and kids and I are all sort of a random group of people, a collection of strays, making our way through this life together. I don’t have much sense of control. But I have a lot of gratitude.

  8. Floyd the Wonderdog says:

    My son had this years ago. I gave him a blessing and he stopped coughing immediately and went to blissful sleep. As a testament to my lack of faith, I was surprized that he had been healed so quickly. Lord, help thou my unbelief.

  9. MJK says:

    E – I’m certainly not a doctor and but it never made sense to me when parents refuse vaccinations. I had the argument with a coworker this year who was a new mother. “You’re telling me you don’t want to get shots for your son that could prevent not one, but SEVERAL potentially fatal diseases? If my child died, or was permanently crippled from an illness *I could have helped prevent* – except that I refused, I don’t know that I’d ever forgive myself.

  10. elizabeth-w says:

    Reading your piece flooded my mind with memories. My six week old baby girl got it from my father-in-law. Only, nobody knew that until baby had been in hospital around the sixth day. The first few days they thought it was RSV.
    My older daughter (3 at the time) also had it, and a few days later in the hospital, I saw sleeping fitfully, and starting coughing until I threw up. I think that is when someone finally figured out what was going on. And yes, I do vaccinate my kids–3 year old just hadn’t had enough boosters yet to keep her immune. And every time she coughed she threw up. Our carpet still bears record to this fact….Finally on the 3rd day we switched her to just eating oatmeal/maltomeal 🙂
    One thing that was awful about the situation was that my brain was used to the sound of my old pump, and I just couldn’t get my body to respond to the hospital one. I was NOT going to give up nursing my baby, so doing a bit of self-hypnosis finally got the milk flowing (it took a day before I really could just start with ease).
    To your point about style–
    I will never forget. It was a Friday night. Midnight. I was topping off baby before a few hours of sleep. She was nursing just fine, left side. All the sudden she arched her back away, violently coming off the breast, and coughed this nasty cough and yellow junk came up. I KNEW something was not right. I told my husband we were going to the ER and that was that. He said ok. He stayed with my older daughter and my dad went with me to the ER. I think my dad thought maybe I was overreacting. But when her saturation would drop to 70% or lower, and the nursing staff got all wound up, and he knew then I wasn’t being overprotective.
    From that experience, I learned that there are times when the Spirit speaks to me in a way that is decisive. I often second-guess myself but there are times I know, really know, what needs to be done.

    Our family’s story got a 2 parter written up in The Oregonian (Portland’s big newspaper). It was amazing the discussion that followed regarding whether or not to immunize. I could never understand the lunacy of not vaccinating. I’d been to India and seen kids with polio. Polio. In the 21st century! But then I met a lady whose child had a reaction to to his immunizations, at 4 months, I believe, and he is severely handicapped now. So, I can understand her hesitancy.

  11. Jana says:

    Elizabeth:
    We had the throwing up, too. Not so much my son, but I hadn’t kept down food or water for a few days by the time he was hospitalized. When I pumped I was lucky to get an ounce due to my dehydration, which of course compounded his problems. He did so much better as soon as he got on an IV drip.

    My pertussis also became pneumonia because I was so absorbed in my son’s care that I just got sicker and sicker. His nurses finally started helping me to get better, too (love Children’s Hospital nurses–they are truly angels) by bringing me food and beverages, etc.

    Of course I know better now about taking care of myself even when I’m caring for my kids (the old oxygen mask analogy–you have to put on your mask so you can help them with theirs), but I was so new at parenting then–and just kept giving and giving…

  12. Jana says:

    One more note on immunizations:
    I study 19th century medicine (I’m a historian). Lately my research has been focused on diphtheria (which is similar to pertussis in the way that it blocks the airways). Only about 20% of young children lived through diphtheria back then–if the disease didn’t kill them then the necessary tracheotomy surgeries often did.

    We are so fortunate to live in a world of immunizations and other forms of preventive medical care.

  13. Jana says:

    Ok, one more note:
    Floyd: I’ve seen many people be relieved of suffering from priesthood blessings, but I don’t believe they should replace appropriate medical care.

  14. And diphtheria is the D in DTP/DTaP etc.

    There was an article in the Oregonian this week about how the rates of belief exemptions from school immunizations are as high as 68% at one of the Portland Waldorf schools. They quoted one of the parents as saying that they thought childhood illnesses would only make the kids’ immune systems better. I am left shaking my head.

    A lot of parents and even doctors have tweaked the immunization schedule to delay and spread things out a bit more. But I think going without most childhood immunizations is not only dangerous to your child, but also unethical.

  15. Azúcar says:

    AnaCA, I know it’s fraught, I have dear friends who have adopted babies or have chosen to use formula, but that’s not the issue.

    Let me explain further, I have issues with the way formula has been marketed in this country and with the utterly shameful way it is marketed over seas.

    It’s NOT about adoptive mothers, or women who are unable to nurse. It’s about the history of these companies, how they invented the concept of ‘nursing in public,’ how they systematically undermined women for half a century, and how they continue to affect undo pressure on several aspects of public health.

    There HAS to be a place for safe, healthy, nourishing formula. (Hello! Melamine!)

    There is NO place for formula companies to continually violate the 1981 International Code for the Marketing of Breastmilk Substitutes.

    Jana asked for the experiences that shaped our philosophies. I can’t think of another experience that has so shaped my philosophy on parenting, or taken my life in such a different direction, than the two weeks I starved my baby because a doctor told me to use formula.

    That is my experience, and no one else’s.

  16. EmilyCC says:

    Hmmm, I thought I posted a comment the day you wrote this, Jana. Silly me…

    When I was in high school, I was sick in the hospital for 2 months. My mom later wrote a fictionalized version as a short story for her MFA program. Her advisor said, “It’s interesting that you chose to write this from the teenager’s perspective instead of the mother’s. I wonder if that’s because one has a harder time than the other.”

    When my mom told me this, I (as a teenager) thought, “Duh! The teenager has the harder time.” But, now, that I’m a mom–gosh, I’m not so sure.

    The responsibility of diagnosing and caring for a child is overwhelming. When do we push back against the authorities? When do we ignore something that pricks at us?

  17. Dora says:

    I have no children, but as a pediatric critical care nurse, I see these types of situations from the other side of the hospital bed.

    One of the he best things that parents can do is to pay attention to their children. Know what their feeding schedules are, and when they are off. Understand what their usual reactions are, and be able to tell the difference when they seem off base-line. It happens occasionally that we receive a very sick patient through the persistence of the parents. These parents know when their children aren’t their usual self, and generally make several back and forth trips to pediatricians and outlying emergency departments until one of the doctors clicks in to the fact that the child is definitely ill. If you have a history of knowing your child, you will be able to be definitive with health-care providers and get your child the care s.he needs.

  1. October 19, 2008

    […] has a great post up over at Exponent about an experience she had with her son as a baby. At the end she asks these […]

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