Did our five-day old baby really need three spinal taps?

My wife just gave birth to our second son at home (on purpose).

And five days later, our pediatrician pushed us into the ER because our baby had a low temperature.

We thought he was just jaundiced (something a lot of newborns get but can be easily treated with special lights). But we weren’t prepared for what happened next.

The ER staff reacted strongly to the low temperature. “Infection” and “meningitis” and “This is necessary!” were words they pushed into us. Then came the terror and a feeling of helplessness. We had concerns about the treatment they thought we “needed,” but what do we know? So we consented.

The staff went into a flurry of activity. The catheter they tried to stick into our son failed. He screamed. The IV failed, too. The second attempt stuck. He was still screaming. Then came the spinal tap. The first two failed!

As a result, he cried and screamed so hard and long that he abruptly stopped and fell asleep. It was like his system just shut down and needed to reboot from all of the stress. The staff acted as if that was normal. We were appalled.

After all that, they asked for our consent on a third try. We were very skeptical. Failure had riddled their work so far. And now they wanted to push another needle into our baby’s spine. We questioned the need and their ability to succeed. They rolled their eyes at us. Then they said that “meningitis has a high probability of causing lifelong neurological damage.” Our son was still screaming. We consented.

Fear is a powerful drug.

Before the ER finished, they scoped his nose, did an EKG, took a sonogram of his brain, took blood for bilirubin tests (for his jaundice), and checked his temperature by sticking a thermometer up his bum every thirty minutes. It all just seemed like so much–too much.

In situations like these, the hospital protocol requires the patient to be admitted for forty-eight hours and receive multiple rounds of antibiotics. They started pumping the first one into his little body to fight infections that they feared might be there.

We were admitted into the pediatric ICU. That seemed like more than we needed but, again, what do we know? A physician’s assistant came and greeted us and said, “There’s just too much talent in this hospital to go to waste.”

When we thought they couldn’t possibly run another test, they performed an echocardiogram for good measure. We wondered what would be next. Chemo?! I can confidently say, they did not waste their talent on our kid.

After about thirty-two hours, all of the tests were still negative. We started asking ourselves, “Why are we still here?” and “How do we get out?”

We told them we wanted to leave and didn’t want the last round of antibiotics since there was still no sign of any infection. They said that some infections could show up after 36 hours of the tests. But we had had enough. And then, they told us, “They won’t let us go until they were ready to discharge us.”

“Won’t let us go?!” I said. “We will go when we want to go. He is our child!” I was incensed. When did a hospital become a prison?

They said that it was New York law for us to stay until we were discharged. I asked for documentation. They said to google it. I said that I already did, which was true, but found nothing. They stumbled. We asked them to present the documentation. That never happened.

Since we entered the hospital doors and told them that we did a home birth, they seemed to be condescending to us, as if we didn’t know how to care, really care, for our kid. They treated us like they cared more about our kid than we did. Apparently most of the staff got a memo to treat home birth families with disdain. And maybe that dynamic caused them to treat us more like prisoners than patients. Regardless, it felt awful. It felt wrong.

We wanted to go, and they didn’t let us. So we waited for a higher authority. Eventually, the attending or head doctor came in and listened to us. It was a dialogue. She was reasonable and wasn’t just possessed by protocol. She was ok with us not having the last round of antibiotics. Then she checked a couple of things and said we could go.

After forty hours, I signed the discharge papers, and we were free.

Now, why am I sharing this experience? It might be to vent, a little–or a lot. But it’s more than that.

It’s certainly not to shame anyone. I didn’t share names on purpose.

But I do want to call the health system into question.

From our experience, it seems like you operate from a worst-case scenario paradigm, which causes you to treat a patient without really looking at them. To us, our child needed a good swaddle, not three spinal taps. But that didn’t seem like an option at all. Why?

Could it be that health systems aren’t incentivized correctly? You are incented to treat every patient on that worst-case paradigm because it’s better for your bottom line. I’m fairly sure swaddling a baby just doesn’t bring in the same revenue that a series of tests, preemptive treatments, and a forty-eight-hour stay does.

It seems like health systems can arbitrarily charge a patient for anything because it’s all in the name of health. And you leverage the fear of illness and death to get consent for practically anything since patients are so vulnerable, especially in the ER. And you upsell and upcharge without any pushback.

And why doesn’t anyone ever say anything about prices? Hospitals are the only place I know that can charge you for services without ever giving a price. I mean all of that talent can’t be cheap.

And for the tens of thousands of dollars that you will charge us, surely the customer service should be better. I mean a kid working at McDonald’s for minimum wage treats me better even if I order from the dollar menu than how we were treated at the hospital.

The condescension, inflexibility, and disrespect weren’t great, yet that’s what we experienced. It was nothing short of rudeness. Yes, I’m well aware that we are strange. And we may be skeptical of hospitals. We did choose to have a baby in our bathtub than in a bed in your facilities. But treating us rudely when we were vulnerable is wrong. Why shouldn’t we ask questions and advocate for our son? Why shouldn’t we be skeptical about doing a third spinal tap? What gives you the right to roll your eyes at us? Where is the care in healthcare?

And then there was the fear. So much of it. Everything was so life or death. Did it have to be that way? Out of all of the stories to tell us, and yourself, you chose was the one that ended with a lifetime of neurological damage. It seemed a touch alarmist. Fear is rarely a good place from which to operate. Yet it was your modus operandi that evening. We would have preferred clear thinking and a smidge more common sense. But fear was the only thing on the menu.

I’m not saying things don’t go sideways. I’m sure they do. And I’m not saying that we don’t need hospitals. We do. And I’m certainly not saying doctors aren’t doing their best. I’m sure they are.

But perhaps the health system in which they work is sick. Maybe it has an infection. Maybe it needs a spinal tap. Maybe it needs antibiotics. Perhaps it is under threat of a lifetime of neurological damage.

For the health system we experienced seems so unhealthy.

In the end, our baby didn’t have an infection, nor meningitis. The antibiotics that some felt were so necessary, weren’t. The three spinal taps that the ER scared us into doing were all for nothing. The worst-case scenario was just a scenario—not reality. He was just a baby who needed a good swaddle, not forty-eight hours of antibiotics.

A couple of days after we left, I felt a lot of regret for listening to our pediatrician and letting their fear propel us into the hospital. But my wife reminded me that he was jaundiced and needed those special lights that help get rid of it.

Yes, all we needed were those.

But that hospital had way too much talent to let us walk away with just some lights.

8 thoughts on “Did our five-day old baby really need three spinal taps?

  1. John, I feel so sorry for what you, your wife and your baby went through. I know how totally terrifying it is to end up in the ER with your babies. I went through it not once but twice. One son had some weird infection and the other did indeed have meningitis. Both were in intensive care and were quarantined. My experience though was handled (for the most part) much more kindly then yours. All the best to you. Linda

    • Wow, Linda. Thank you for that sobering story. I’m so sorry that your kids and you went through that. I hope it all worked out ok. Appreciate you. All the best to you, too. -John

      • Yes, it all worked out just fine. Each event happened 1 year apart almost to the same day. I remember commenting to the doctor I was scared about what might happen the next year. Both very healthy kids and now adults.

  2. This would’ve been awful to see, how sad. Our Son has been well but I couldn’t imagine having to watch him go through something like that.

  3. Your story is a terrible story – if your tool is a hammer, then you will want to hammer things, and any major hospital is full of tools and different doctors wielding them. The good news is, kids are resilient, and you have the chance to learn from what happened. Also, writing about it is a lot more than a lot of parents (and patients themselves) do when they find themselves with an experience so traumatic. I was also bullied into a procedure that I did not want my child to have. Best of luck. This is my first post reading, I just got an email from you and Grain (and trying to find out how you found me), but thank you!

    • Hi Keri, thank you for your kind and thoughtful words. It was very sad and upsetting. I thought that other parents should know about it. And I wish you luck, too! I’m not exactly sure how you landed on our email list, but I’m glad you did, too! Looking forward to staying connected. All the best, John

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