Author’s note: The following story happened about six months ago. I held off writing about it until now for two reasons. 1) I had a lot of thoughts and emotions to process, and although writing can be part of my healing, I try never to make it the sole medicine. 2) The medical facility where this story unfolded was my employer at the time, and while I have never named the company or its location, I didn’t previously feel comfortable speaking about it publicly.
In early November 2017, my daughter and I had colds. She missed a couple days of school, and I was so congested that I wondered if I would ever breathe normally again. Like it does in most healthy people, the crud passed for both of us, and we felt better fairly quickly. During those few days, I tried my best to keep my hands away from my mouth, nose and eyes – knowing that touching them could prompt the spread of germs. I desperately wanted Vincent to stay healthy. I knew my breast milk was producing antibodies, so I was hopeful he would not catch whatever bug Cecilia and I had.
About three days after I was well, I noticed Vincent was starting to get a little snotty. As the day went on, he seemed irritable, was sleeping more than usual and was nursing less than normal. I took his temperature, but there was no fever. Before the afternoon was over, I decided to call the pediatrician’s office, mostly for reassurance that I was doing everything I could. Keep him propped up, run a humidifier, suction his nose if necessary. Check, check, check. Then, the nurse said the words that determined our fate for the next 12 hours: “If he develops a fever of 100.4 or higher, you need to bring him in if it’s during regular hours or take him to the Emergency Room right away.”
I had heard and read this before, but, honestly, I didn’t think much of it. I was almost 100 percent sure Vincent had caught the same bug that his sister and I had fought.
But a few hours after that phone call, I took Vincent’s temperature again, and it was 101.5. So I had a decision to make. Despite what the nurse told me, I still had the question, why go to the Emergency Room? What was so magical about the number 100.4? I later learned that in the medical field, healthcare workers generally do not even consider an elevated temperature a true fever until it reaches 100.4 or higher. And with Vincent being less than 90 days old, any fever was a red flag. This is because most newborns (babies under 3 months of age) are protected by leftover antibodies from birth and those in breast milk. Therefore, a fever is considered worthy of the Emergency Room.
I was still hesitant, but after Mike Googled and read some information about newborns and fevers, he suggested I take Vincent. Reluctantly, I left the house. It was about 7:30 p.m. on a Monday evening. Both of the older kids had to go to school the next day, and Mike had to be at work at 5 a.m.
Upon arriving at the Emergency Room, I gave Vincent’s information to the person at the check-in desk.
After just a few minutes, we were called back to triage, where two people asked me a few questions and took Vincent’s temperature. It had climbed a degree – up to 102.5. The one nurse looked at the other and simply said, “Peds.” His tone was calm, but I could sense an urgency in their voices and mannerisms.
They escorted Vincent and me to a room in the pediatric section of the Emergency Room. Again, it was only a few moments until a nurse, who I will call Nurse 1, entered and asked the same questions I had answered in triage. As I sat on the bed breastfeeding my baby who was one day short of 6 weeks old, I started crying. “I had a cold, and I gave it to my baby. And he’s so little, and he has a fever.”
As nurses usually are, she was compassionate and kind. She told me it was not my fault my baby was sick, but of course I didn’t believe her because I am a mom. And we moms are always trying to figure out how to make things our fault. How to pile on the guilt to the already exhausting, guilt-ridden gig of motherhood.
She listened, took notes, gave me a box of tissues and said, “The doctor will be with you shortly.” I sat there in that ugly, drab room, clinging to my baby and praying I was right. “Please, Lord, let it just be a cold.”
I don’t know how much time elapsed before the doctor came into the room.
He was young, I could tell. Definitely younger than me. Unfortunately for me and Vincent, he was not compassionate. He stood by the sink and got straight down to business, letting me know that fevers in newborns are bad. Very bad. My baby could die. And in order for them to help my baby not die, they had to follow the standard protocol for fevers in babies between 30 and 90 days old: chest x-ray, nasal swab, blood work-up and urine sample via catheterization. Immediately, I burst into tears. I felt like someone punched me in the stomach. It all seemed so invasive. And my amazing home birth (which I did not dare mention, by the way) was still so fresh in my mind. The thought of someone poking and prodding my tiny baby was unbearable.
“Why are you crying?” Doctor inquired. Probably the most insensitive question possible.
I tried my best to describe my concerns with my son being held down and stuck. This included the fact that my baby is intact.
“You mean his foreskin is intact?” Doctor asked.
“Yes,” I replied as nicely as I could. (What else would I possibly mean?) “I am afraid someone will retract his foreskin to insert a catheter. Does anyone here know how to catheterize without retracting?”
“I can talk to the nurse about that.”
“I will not consent to catheterization unless I know for sure there will not be any retraction.”
“It’s very important we get a urine sample.”
“Why? What are you testing for?”
I’m sure I rolled my eyes. “He does not have a UTI. He has a cold.”
“But we can’t know that for sure unless we test him. If he does have a UTI and it goes untreated, it could cause sepsis. And that is life-threatening.”
“If you want a urine sample, you can use a catch bag. No catheter.”
“That will not produce a clean sample.”
“I will not consent to a catheter at this time. If the urine sample from the bag shows an infection, then we can discuss it further.”
Maybe he finally sensed the mama bear was not backing down. He decided to move on. “What about the chest x-ray, nasal swab and blood draw? Will you consent to those?”
“Chest x-ray, yes. What are the reasons for the nasal swab and blood draw?”
“Nasal swab tests for viral infection. Blood draw tests for serious bacterial infection.”
The tears started to come again.
“I don’t mean to upset you,” Doctor said. But his words meant nothing to me. My perception was that my baby was a statistic to him. It’s probably obvious, but I did not like him. Not at all.
“This is all too much for me. I don’t know what to do,” I whimpered.
“You brought him here. Don’t you want us to help him?” Another punch in the gut.
I don’t remember where our conversation went after that.
I believe he sensed that the dialogue was not moving forward, so he took a break and left the room. Shortly after, someone else entered the room, wheeling a machine into the small space. He probably introduced himself. He was there for the chest x-ray. It was simple. I had to place Vincent on the surface, and the technician took two scans. Then he left.
Next, Nurse 1 came back with someone new, Nurse 2. She was also nice. They had supplies with them this time – one of which I could see was an infant catheterization kit. I could feel fire rising inside of me. “You are not using a catheter on him. He is intact, and I will not let you retract his foreskin.”
“Can we just take a look?” Nurse 1 asked. “I promise not to touch.”
* * *
Since at this point, some of you may be confused, I am going to do a brief aside and explain why I was so concerned with the catheter for the purpose of gaining a urine sample.
First of all, a catheter is invasive and painful for all people – boys (intact and circumcised) and girls, men and women. Second, as I noted in a previous post, “Why we chose to keep our son intact,” an infant’s foreskin is fused to the penis. Therefore, retracting (pulling down, separating, manipulating – whatever you want to call it) can cause damage. Only the owner of the penis should ever retract the foreskin because only he knows how far it can go without damage.
Here in the United States, where, unfortunately, circumcision is still common, many American doctors are, well, uninformed on intact care. Some of them tell parents that they should be retracting their infant’s foreskin to clean it. Wrong. Just like the vagina, the penis is a self-cleaning organ. We don’t tell parents to clean inside their daughter’s vaginal canal, just like we don’t wash under our eyelids or pull off our fingernails to clean them. Or, some healthcare providers believe retraction should happen by a certain age, say 3 or 5 or 7. No. Retraction is a sexual function; thus, it usually occurs by puberty, but not always. There is a wide range of normal. So, why on Earth would doctors give this bad advice, despite even the American Academy of Pediatrics’ recommendation never to retract the foreskin? As I already said, one reason is because circumcision is still common, and proper care for a cut penis is to push back the remaining skin for about six months after the surgery. Otherwise, adhesions could develop. The other reason is because correct hygiene for an adult intact penis is to retract the foreskin, rinse underneath and replace the foreskin. So I guess practitioners get confused and think all foreskins need to be pulled back to clean?
All of that said, there are plenty of hospital staff members who do not know how to catheterize an infant’s intact penis. Some medical personnel believe you have to retract the foreskin to insert a catheter. This creates a bit of an anomaly because the purpose of a urine sample is to test for infection, but retracting the foreskin and placing a foreign object into the penis can actually introduce germs. It is possible to insert a catheter without retraction, though I’m sure it requires practice and finesse. Usually, NICU nurses are familiar with this process called blind catheterization because most baby boys in the NICU are not circumcised.
Now, I am a writer – not a medical professional, not even a scientist. I have no first-hand experience with catheterizations, so you are welcome to stop reading, click the red X on your web browser and move on. But as a writer, I am also a reader, and I have done quite a bit of research on proper intact care. It’s actually not hard because virtually every other developed country in the world does not practice routine infant circumcision, so there are credible sources that support blind catheterization. However, it is my educated opinion that a catch bag should be the first option for a suspected UTI in baby boys – again, whether he’s intact or not. Sadly, many American healthcare workers disagree, and some do so because there is a lingering sense that the foreskin is dirty, making a clean sample impossible. Again, if you leave an infant’s foreskin alone and never retract or manipulate it, it is not dirty. Nothing can get inside because there is a sphincter that opens only to let pee escape. I’m not saying catheterization is never necessary; I’m sure there are many times when it is indicated. I just believe Vincent’s case was not one of them. As you may have noticed from my above dialogue with Doctor, you will most likely have to fight – and I mean fight – with medical professionals for a catch bag.
* * *
OK, back to the story.
Very reluctantly, I agreed to let Nurse 1 and Nurse 2 look at Vincent’s penis. I stood over them, ready to pounce if they touched him. After a brief inspection, I guess they thought a catheter was not a good idea because they set the kit aside. I wasn’t sure if they were moms, but I liked them.
“All of these tests seem so invasive,” I shared. “What would you do if this were your baby?”
“We can’t tell you what to do,” Nurse 1 said. “You are the mom. You are in charge.”
Nurse 2 added: “Just so you know, one option is to let us do the viral swab, which is just like a Q-Tip up his nose. If he tests positive for a virus, then everyone might feel better about not doing the blood draw.”
“I like that idea. Let’s do that.”
So Nurse 2 stuck a swab up Vincent’s nose. He cried for a few seconds.
I knew it was going to be a bit of a wait until the viral results came back.
The nurses turned down the lights and offered to let Vincent and me rest. Thinking I could sit in peace for a little while, I was surprised when Doctor returned. He resumed his position, standing by the sink. I did not say anything to him – just gave him the icy stare that exudes, “What do you want?”
He must have picked up on my body language because he said, “I’m here to convince you to get the full work-up.”
Silence from me. Probably accompanied by pursed lips and a furrowed brow.
“A fever in a baby this age is serious. Even if there is a virus present, there could still be a bacterial infection. If we don’t test blood and urine, we won’t know that.”
What I’m about to write might be wildly unpopular. Especially with my readers who work in medicine. But I’m going to say it anyway. I truly felt as though Doctor did not care one bit about me or my baby. He was more worried about his stupid protocols and rules. Given my experience with this less-than-compassionate doctor and my background in healthcare marketing, I couldn’t help but wonder: Are these tests being pushed because they are truly what’s best for the patient? Or is there another reason? You see, I have a unique perspective on hospitals. I used to work for one – in the marketing department. I had been present at meetings where everyone sat around a table and brainstormed about how to make more money, or how to “put heads in beds.”
Now, I’m not saying this doctor was consciously thinking, “How can we make more money from this patient?” He is probably a good person who decided to become a doctor because he wants to help people. But I am not stupid. Hospitals are businesses with a bottom line. Labor and delivery wings are the perfect example. If you read my series on home birth, you can probably glean how I feel about the (often unnecessary) interventions that take place during births. Laboring mothers are sometimes coerced into these interventions because some providers stir fear. And I started to feel like Doctor was using fear-mongering with me. So I called him on it.
“I don’t appreciate you using fear mongering to try and get me to agree to subject my baby to these tests.”
At long last, the young, arrogant Doctor pulled up a chair and sat down next to me and my baby at the bedside.
“I’m not trying to make you afraid. I’m just being honest,” he said. “A fever in a newborn is serious, and I’d like to rule out all the bad stuff.”
“Are you a resident?”
“No, I’m an attending.”
“For how many years?”
“This is my first year. But this is not the first time I’ve treated a newborn with a fever.”
“If I agree to the blood draw, can it be done while I nurse the baby?”
“I’m not sure. You can ask the nurses.” He paused, then added, “Would it make you feel better to talk to our pediatric team? They can explain to you the protocols and why we want to run these tests.”
“No. You’ve already told me. I don’t need someone else to tell me the same thing.”
“You seem very knowledgeable…”
“I work for this hospital,” I interrupted.
“Oh, and you’re not having a good experience.” So maybe he was more perceptive than I originally thought.
“No, I’m not. We will wait for the results from the viral swab.”
He left, and I never saw him again.
The next pair to visit Vincent and me were the pediatric doctors I said I didn’t want to see. Both female residents. (For the record, I have nothing against residents. I am mentioning it only because it reflects level of experience.) The more senior resident was incredibly kind. Soft spoken and a good listener. I don’t know if it was the time that had passed, allowing me to calm down, or the pediatric doctors’ demeanors. But I found myself consenting to the blood draw, if the nurses agreed to let me nurse the baby while they did it. I still refused the catheterization, but we found common ground when the doctors settled on a catch bag for a urine sample.
The blood draw was the worst part, but Nurse 1 and Nurse 2 were caring and accommodating. I breastfed Vincent while Nurse 2 held his arm and Nurse 1 inserted the needle and drew the blood. He cried when she first stuck him. Other than my boob hanging out for everyone to see, it was not eventful. But they’re nurses – they don’t care about boobs.
So how did the story end?
Vincent tested positive for parainfluenza 1, which is a fancy way of saying he had a viral respiratory infection. It is known as a virus that causes croup. The chest x-ray, blood work and urine sample returned nothing of interest. He had a cold. I believe this may have been part of the reason Doctor never came back. We were discharged and went home.
* * *
After reflecting on this experience for months, I still don’t know if taking Vincent to the Emergency Room was the right decision. On one hand, I was happy to have my gut instincts confirmed. On the other, it was the scariest parenting situation in which I have ever found myself. How could I not feel terrified when someone said, “Your baby could die”?
I know it may seem like I am being particularly hard on Doctor. While I still do not think fondly of him, I may understand his mindset. He is an emergency medicine physician, so he is probably trained to defy death. He has seen the worst, so he expects the worst. He approaches patient care with a “rule out the bad” mentality. Conversely, I felt the pediatric doctors had a more realistic point of view. They saw the big picture – mom and big sister had a cold, and baby has cold symptoms.
If I had not taken Vincent to the Emergency Room, I probably would have been awake all night anyway – holding him, keeping his head elevated, wondering if the fever was from something other than a cold. Instead, I was awake all night arguing with doctors and crying to nurses. Like I said, I’m not sure I made the best choice.
Parenting is hard.
That comment from Doctor – You brought him here. Don’t you want us to help him? – that still lingers. Why did I do it if I was almost sure the fever was from a cold? Because the nurse at the pediatric office said to? Because Mike Googled fevers in 6-week-olds and found the worst and encouraged it? Looking back, I honestly don’t know. Perhaps it was so I could tell this story. So I could let you know that you are allowed to fight. You do not have to do whatever a doctor or nurse says. You are your advocate for your own health, and if you are a parent, you have to advocate for your child’s well-being. I am not saying doctors and nurses are bad or that they are out to do harm. No, in fact, they likely pursued a healthcare career because they want to help people. I know many wonderful providers. But in this particular situation with Vincent, I felt as though protocols were driving everything, leaving little room for intuition and discernment.
This has been heavy, I know. So I would like to end on a light-hearted, positive note. As a result of the Emergency Room visit, I learned about the Nosefrida, which is one of the greatest inventions the parenting world has ever known. Get one now so you have it ready. If you ever need to suction your baby’s nose, you will be thankful you have it.
You go Moma Bear! You were EXACTLY right!! Some doctors are concerned and compassionate; some are not! I understand protocols, but they are black and white. A good doctor sees gray and considers options!
You have taught all of us that we can and should be our own advocate or our baby’s advocate!! Thank you for your courage to write this and thank God you are Vincent’s Mommy!!
I have been waiting for you to write this story. I knew it would be written . I was so fiercely proud of you that night for standing your ground and not letting the staff bully you into doing all they wanted on our little Vincent. We were all thankful that your gut was absolutely right. You have taught me so much Apie !! And….that was the second time I made a crazy fast drive to Morgantown !! Love you to the moon and back !!!