My daughter Scarlet was just 4 days old when a routine pediatric visit detected an elevated heart rate over 200. There were no discernible symptoms, so we were all surprised. The pediatrician explained, "there is a range of normal and this exceeds that range, and if left untreated her heart will start to enlarge and you don’t want that”. Off to the children’s emergency room we go.
Upon entering the ER, an entourage of personnel appear, each asking various questions and each commenting “she looks a little jaundiced”…”yeah, she does”…”hmmm”. They confirm a heart rate of 230, and hook her up to an EKG to get a more detailed analysis. A cardiac specialist arrives and tells us that this sort of thing occasionally happens, for reasons unknown, but that it has nothing to do with the labor or pregnancy. After reviewing the EKG readout, he states that it’s most likely something called SVT, which is easily fixed using a medication called adenosine that gets administered through an IV. As they hook up the IV, he explains that this will work immediately but that Scarlet will need to continue receiving treatment over the course of a year, at which time we would reassess things. They administer the dose - heart rate drops to normal levels, everyone sighs, then it shoots right back up. Let’s try it again with a higher dose. Same result. Ok, let’s get another EKG printout.
The specialist goes to work analyzing the printouts and begins making some kind of calculation. He then concludes confidently that the proper diagnosis is actually something called atrial flutter - essentially, instead of blood flowing directly from the upper chambers to the lower chambers of the heart, it’s looping around the upper chambers first. This is good news, he explains, because it will not involve any ongoing medication. We simply correct the rhythm, and then we’re done forever. Sounds great to me. There are two treatment solutions: 1) chemical, via oral medication called propranolol 2) electrical, via shocking the heart. While he prefers the 2nd method due to it’s greater efficacy, he suggests we start with option # 1 because at this time of day (roughly 8 PM) we will need to stay overnight in the PICU for constant monitoring no matter what, so we might as well try the less invasive method first. The PICU sounds like a nice relaxing place to not get any sleep…can’t wait.
The plan is simple: give her one dose now, followed by a second dose 6 hours later, and a third 6 hours after that. If by noon tomorrow the tachycardia has not corrected, we will then proceed with shocking the heart. How long will the propranolol take to work? No way to know, he explains…”maybe it takes only one dose, maybe all 3, maybe it doesn’t work at all…the heart rate will be under constant supervision so we’ll just have to see how things develop…make sure you don't feed Scarlet after 8 AM, because if we need to shock her heart we want her to be on an empty stomach”. Roger that.
The first dose is given, and we wait in the ER room while our PICU suite is being prepared. 1 to 2 hours later, they set up a portable monitor and start transporting us. I notice the monitor shows a heart rate of 135, so I ask the nurse if that's an accurate reading of her heart rate. “Yes”, she replies. Wow, it looks like it already worked!!!
Into the PICU we go. A new cast of characters is now in the mix. Two nurses are getting things situated while discussing the plan with the chief of the floor. One nurse comments, “she looks a little jaundiced”. The other nurse responds, “yeah, she does”. I ask if the 2nd dose of medication will even be necessary, given her heart rate has already stabilized. The chief replies, “you’re going to need all 3 doses, otherwise the heart rate is just going to climb back up”. I guess he knows something the specialist doesn’t. The chief then says, “no feeding after 7 AM”, to which a nurse replies “oh, I was going to say 6 AM”. I inform them the specialist instructed 8 AM and the chief says “well, you can go up to 7:20”. Fine.
They do a general inspection of Scarlet, ask the same background questions the ER staff did, and put her on IV fluids. A nurse then comes in hourly to assess things, mentioning at one point, “my daughter was jaundiced too and had to be under a light for 3 days”. Thank you for sharing that.
Around 1 AM a new woman enters the room and explains she is the resident nurse tonight, and that if we have any questions or concerns to just ask her. Then she takes a look at Scarlet and comments, “she looks a little jaundiced…has anyone told you anything about her being jaundiced?” Only the fools within this hospital. I explain her bilirubin tests were fine 2 days ago, and that earlier that day she was examined by the pediatrician who said nothing of jaundice. “Hmmm, she’s looking jaundiced, and it can start creeping up around this time…we’re gonna need to do a bilirubin test”. If you say so. As I look around the room, I’m struck by the seeming absurdity of attempting a visual assessment of jaundice in a room with yellow walls and yellow lighting. But I’m no doctor, I suppose. The resident nurse then tells me, “no feeding after 8 AM”. Got it.
Fast forward to 3 AM. Scarlet’s heart is still holding between 115 and 130 on average. I let a nurse know that it’s time for Scarlet to receive a 2nd dose of the propranolol. “Yeah, the pharmacy doesn’t have it ready yet, I just called - they’re making one up now”. Got it, no worries, it’s just my newborn’s heart rate we’re talking about here…it can wait. 3:30. 4:00. 4:30, the 2nd dose is administered.
Fast forward to 7:30 AM. I find the resident nurse and ask if the 3rd does will be pushed back, since the 2nd dose was given 1.5 hours late. “The 2nd dose wasn’t given at 3 AM?” she asks. No. “Why not?” How the fuck should I know? I explain that pharmacy apparently didn’t have it ready, for whatever reason. She looks to the other nurse, “why wasn’t I told about this?” Silence. She takes about 1 second to ponder my revelation, and says, “we’ll still give her the 3rd does at 9 AM as planned”. Ok.
9 AM arrives - no one comes in with the 3rd dose. Her heart rate is still exactly where it had been since transporting to the PICU. Now there’s a big head honcho on the floor, who I’m told by a nurse is “the boss”, presumably of the entire hospital, and he’s walking with a bunch of student doctors and nurses from room to room discussing each case. At 10 AM they get to my room, and the cardiologist on call joins them (the cardiac specialist from last night is no longer on site). They begin discussing Scarlet’s situation right outside the room, in plain view and earshot. I’m not sure if I should act normal, stay extremely still, or throw feces at them. The resident nurse from earlier is in the pack, and she starts giving a play by play: “heart rate elevated, they initially tried adenosine, then switched to propranolol, she’s had glucose checked every 4 hours, and she looks jaundiced so I ordered bilirubin tests” _ (side note: it took 3 bilirubin tests for them to finally let go of their jaundice fixation).
Bossman then asks the same series of background questions. Is she peeing and pooping? Yes. Any history of heart problems? No. Etc, etc. I hear him say something about the specialist wanting to given another dose of adenosine, so I insert myself into the conversation, explaining the specialist had initially considered doing so, but ultimately decided against it upon confirming his analysis of atrial flutter. Bossman asks if anyone knows what the heart rate was during labor, and I inform them that it was between 140 and 160 for the duration of the labor. Bossman turns to me, “how was the baby delivered”? Vaginally. “Was it a normal delivery?” Yes, the baby came out of the vagina and not the anus. He turns back to the huddle, “well if she’s peeing and pooping and breast feeding, I’m not that concerned given how great these heart rate numbers are looking”.
As the huddle begins to disband, I ask the obvious: “so is Scarlet still going to get a 3rd dose?” The cardiologist responds “yes, we’re going to give her the 3rd does…she’s going to be on this medication for a while, about 9 months, so we’ll be giving you medicine to administer at home as well”. I calmly explain that my understanding from the specialist was that once the issue was resolved by this afternoon, there would be no further medication required. She looks at me like I have two heads, and asks if perhaps I misunderstood the specialist. No, definitely didn’t misunderstand anything. In fact, come to think of it, I’m the only person here who actually had a face to face conversation with the man. She says “well, I’m going to check in with him, so I’ll see what he says…hey, I’d love to be wrong about this”. She walks out with her associate, and eventually comes back in to report that we don’t need the 3rd dose after all, and there will be no further medication required - we just need to do a final EKG and Echocardiogram for definitive confirmation. Great!
2 hours later, someone comes in to do the EKG and Echo. I’m told the results are being sent to the cardiology floor for analysis. 1 hour later, the cardiologist appears to say everything looks great and we can go home - we just need to wait for a nurse to prepare discharge papers. Shortly after, the cardiologist’s colleague from earlier comes into the room to give us a script for the propranolol medication that Scarlet will be receiving at home. Uhhhh, what? I explain that the specialist informed the cardiologist that such was not necessary. The colleague says “oh, I spoke to the cardiologist earlier and she told me this would be necessary”. “Right, well it would seem that the cardiologist spoke to the specialist after speaking with you, but neglected to follow up with you”. She says, “oh, ok, well then I’ll just confirm that with her, but it sounds like we won’t be needing this after all”. Another 2 hours later we have discharge papers. Get me the fuck out of here.
The moral of the story is, while hospital staff are tremendously skilled and caring people, the environment in which they work is often frenzied and the communication therein can be highly dysfunctional. And while it may be tempting to assume that this all must have occurred in some dilapidated institution with substandard personnel, rest assured the facility in question was very well regarded. So never assume that anyone knows what is actually going on…this is not to say don’t trust your doctor, but rather, don’t assume that your doctor has been fully informed. It is imperative that you attentively listen to everything that is said in your presence, ask whatever questions you may have, be highly observant, and not be too grief stricken or exhausted to monitor what is happening, or too intimidated to politely inform of any contradictions in procedure.
In addition, it has never become clearer to me that if left to their own devices, hospital personnel would eventually start transporting patients to underground bunkers. They are accustomed to encountering horrific situations and are therefore extremely paranoid about everything…this is entirely understandable, but it’s important to concede that this approach inevitably brings risk of unnecessary testing and treatment. So patients and families need to provide a balance, when necessary, in order to make sure things don’t snowball out of control. In the end, if I had not been as watchful during the above 24 hour saga, Scarlet would have received medication that she didn’t actually require…potentially 9 months worth! So let this be a cautionary tale. And please, conduct a thorough inspection of your children, because they're looking a little jaundiced from here.