Need Quick Advice: Should I consent to lumbar puncture for my baby?
April 26, 2020 2:28 PM   Subscribe

My 7 week old son just got admitted to the hospital. They ran a bunch of tests and identified that he has a fever of 103, he has an infection, and he has a UTI (which is apparently uncommon in infants).

They are now asking for our permission to perform a lumbar puncture. They said that since this is a needle into the spine, they need explicit consent from the parents before proceeding. I believe that their goal is to check for meningitis. We are asking for a second opinion from our son’s pediatrician but haven’t heard back yet.

I’d really appreciate any and all informed advice or feedback on this before proceeding. We’re obviously Googling like crazy.

We need advice quickly, as they need our decision very soon.
posted by JPowers to Health & Fitness (18 answers total) 2 users marked this as a favorite
Response by poster: I should also mention... My son had a dilated kidney in utero, which they believe may be related to this issue. He received a post-delivery ultrasound within the 12 hours of birth, which showed some fluid in the kidney, but not enough for concern. He then received a second -post-delivery ultrasound a week after birth, which again showed some fluid in the kidney, but again not enough for concern — at this point the doctor did not suggest that we needed any follow up treatment or monitoring for the issue.
posted by JPowers at 2:33 PM on April 26, 2020

Why wouldn't you consent to this procedure?

This is a serious question. My daughter was born 15 weeks early and spent five months in the hospital. She has had many, many medical procedures. She had more procedures before her due date than I've had in my life. We consented to everything the doctors recommended. They are doctors; we are not. It doesn't sound like you are doctors and google (and mefi) are terrible places for medical advice. Without googling anything, I know that the benefits of a lumbar punture outweigh the risks or doctors would not be recommending it for a seven week old (or anyone).

So I ask again, why would you not consent?
posted by peanut_mcgillicuty at 2:34 PM on April 26, 2020 [55 favorites]

I think that you could get some peace of mind if you have the option of a second opinion - I would try to get your pediatrician’s response pretty quick. Do they have an after hours hotline you could use to get in touch?

Otherwise, trust your doctors. A lumbar puncture is invasive, but the risk of a complication from your son’s symptoms is greater. Meningitis cost a friend’s two year old her life - I say this not to scare you further but to underscore the urgent need for you to trust your medical professionals.
posted by Everydayville at 2:45 PM on April 26, 2020 [1 favorite]

I would consent. I have 3 kids ranging age from 6-21. Over the years I’ve tried many approaches including alternative medicine and some sort of natural/ low intervention style doctors. I would not hesitate to consent and I would do it sooner rather than later. I’ll leave to a health professional to describe why.
posted by Rapunzel1111 at 2:47 PM on April 26, 2020

Best answer: We were in this exact situation at 4 weeks. We consented, my son had viral meningitis (he's fine now). It was terrifying but I never considered not consenting and would make the same decision again. At this vulnerable age, you really need to rule out all issues, and as I understand it, lumbar puncture is generally indicated in this type of situation.
posted by Knicke at 2:53 PM on April 26, 2020 [8 favorites]

Best answer: Nurse here. Lumbar punctures sound frightening, but are usually very low risk. I've seen dozens of them as a neurology hospital nurse and complications are very rare. Meningitis, on the other hand, is a potentially life-threatening and disability-producing infection. My husband's aunt never talked ever again after she contracted it as a child and didn't receive needed medical intervention. She lived to be 70, mute from brain damage.

Please question the doctors closely and ask what they are hoping to learn from an LP. and really, the internet is definitely not the place for specialized neonatal advice. Your son is a tiny baby and his health is in jeopardy. Everything is much scarier with newborn babies, and the stakes are much higher. Please, please listen to qualified medical advice, NOT Google.
posted by citygirl at 2:56 PM on April 26, 2020 [47 favorites]

Why wouldn't you consent to this procedure?

There is a fairly high rate of complications which I'm sure they were informed of. It certainly gave me pause when I was informed

What I would not do: take advive from non doctors on the internet

What I would do: ask if the results will affect treatment. Ask for a pediatric specialist consult if you haven't had one already and can't reach your own doc. Reach out to friends and family in the medical field. Make a decision based on that.
posted by fshgrl at 3:02 PM on April 26, 2020 [1 favorite]

Best answer: "So I ask again, why would you not consent?"

Because people get scared, because it sounds really frightening to have to give explicit permission like that, and sometimes people need a little kindness and more information. I can't imagine saying your harsh words to a frightened parent with a sick infant in a hospital in the middle of this pandemic.

I'd ask the doctors for more info, explain that you're unfamiliar with the procedure, and get a little more understanding. Then yes, let them do the test because the dire alternatives are generally more dangerous than the procedure. Good luck to you.
posted by thegreatfleecircus at 3:03 PM on April 26, 2020 [15 favorites]

Best answer: I consented to this procedure in an infant less than 3 days old. She turns 4 in August thanks to the lifesaving treatment she received.
posted by notjustthefish at 3:09 PM on April 26, 2020 [8 favorites]

Best answer: No stranger on the internet can tell you what you should or should not consent to in this circumstance.

That said, this stranger on the internet can tell you that lumbar punctures are a fairly standard diagnostic procedure for infants with a fever of unknown origin. It’s not outlandish that it was suggested.

I’m so sorry your baby is sick, and I hope he feels better soon. I can’t imagine how stressful this must be for you. Take good care.

I’m a nurse. This is not medical advice. Don’t take medical advice from strangers on the internet.
posted by jesourie at 3:22 PM on April 26, 2020 [9 favorites]

Response by poster: Thanks to everyone for the posts — it has been very helpful. My primary goal in posting this was primarily to confirm that what the doctor was suggesting was reasonable and routine — some of the answers above have been very helpful in that regard.

Update: We consented to the lumbar puncture — primarily based on the advice we received from both our ER doctor and our pediatrician. They are performing the procedure now.

If anyone else stumbles across this post from this point forward, we’d still love information from other parents who have gone through this situation, and/or medical professionals who have anything helpful to share.
posted by JPowers at 3:38 PM on April 26, 2020 [13 favorites]

Best answer: I'm a neurologist and have done a few hundred lumbar punctures in my day, including on babies. As others above have indicated, it's the only way we can test for really serious illnesses, and they are absolutely indicated as part of a fever workup for an infant.

LPs seem scary, but in experienced hands, they are not much worse than a blood draw, just under super sterile conditions (special gloves, drapes, etc). The worst part is the positioning, as it's easiest to access the L4-5 interspace way down in your low back if you can draw your knees up to your chest, like curling into the fetal position or, in the words of one memorable co-resident for whom English was a fourth language, "be a shrimp!"

The reason we go so low is that the spinal cord actually ends around L2 (around the small of your back) and so by skipping down a couple spaces, we can siphon off fluid without risk of contacting the cord itself. That's true for adults as well as kiddos. Where I trained we did infant LPs with ultrasound, but I actually find it easier to do by surface anatomy because wrangling with the ultrasound is tough unless you have a non-sterile helper who can keep the cord away from the sterile field.

Good luck to you and your family, and I hope your baby gets better and gets home soon!
posted by basalganglia at 4:17 PM on April 26, 2020 [27 favorites]

Best answer: I can't imagine saying your harsh words to a frightened parent with a sick infant in a hospital in the middle of this pandemic.

I am very sorry if my words came across as harsh - they were not intended to. As I mentioned, I have been through this myself, many, many times. Including resuscitation, heart procedures, MRIs and multiple surgeries. I understand that people get scared - and my question was sincere, as the poster did not mention what their concerns were. Tone makes a difference, and I'm sorry that mine didn't come through as I intended.

To the OP, I hope your baby gets well soon.
posted by peanut_mcgillicuty at 6:26 PM on April 26, 2020 [9 favorites]

Do keep us updated on the baby, we're all hoping for the best.
posted by Eyebrows McGee at 6:52 PM on April 26, 2020 [3 favorites]

Response by poster: Thanks again to everyone for the posts — please keep them coming!

Update: The lumbar puncture was performed successfully, without any reported issues. They said that we should receive the results tomorrow.

He has now been admitted to the hospital. He’s connected to an IV, and he has started both fluid and antibiotic bags. They gave him Tylenol, which causes his temperature to temporarily drop down to 98.5. Some hours later though it returned to 103, when they gave him more Tylenol.

Mom is with him, but I (the father) am at home taking care of our healthy three year old. The hospital has an understandably strict rule in place right now that each patient can have only one visitor in the building at any given time.

At this point we’re waiting for results on three main tests: the lumbar puncture, an ultrasound (I believe to identify how his kidneys are doing), and yes, of course, a COVID-19 test.

I’ll probably keep posting updates here — I’m not sure why, but it feels good to think other people out there (outside our little family) care.

And peanut_mcgillicuty, please don’t feel at all bad. Everything you mentioned was entirely fair and productive, I didn’t take it as negative or hurtful in the least. Really. Please don’t fret. :)
posted by JPowers at 7:17 PM on April 26, 2020 [58 favorites]

Check your Me- mail
posted by Suffocating Kitty at 7:35 PM on April 26, 2020

I'm glad your littlest one is in good hands.

My first-born spiked a fever of 104 at two weeks old. We didn't even call his doctor's office, just took him straight to the pediatric ER. My now ex couldn't stay because of work, but I stayed the entire two weeks my baby was hospitalized.

One of the first tests they ordered was a lumbar puncture. I consented, but insisted on staying in the room while they did it. They tried very hard to dissuade me, concerned that I might pass out or some such thing, but I insisted. I can absolutely guarantee it was worse for me than for my son.

Turned out he had a staph infection from where I accidentally clipped one of his fingernails too close. The hospital visit was harder on me than it was on him.

My little man is now a 6'4" adult, who only knows he was hospitalized for the second half of his life when he was so young.
posted by The Almighty Mommy Goddess at 4:17 AM on April 28, 2020 [2 favorites]

Response by poster: Final Update: Baby Casper spent three total nights in the hospital, and is now back home doing well. The culprit was indeed the UTI, which caused a pretty bad bacterial infection. He has since responded well to the antibiotics. Once he completes the full run of antibiotics he'll head back to the hospital to undergo a voiding cystourethrography (VCUG), which our doctors believe will identify why he came down with the UTI in the first place. That should tell us what the next steps are to keep him happy, healthy, and UTI-free going forward.

To anyone else who stumbles across this post in the future, here are some things that I've learned:

- If you have a febrile infant, you really should consent to a lumbar puncture (LP), before antibiotics are started. Meningitis is no joke, and you want to know as early as possible if that it what you are up against (luckily for us, meningitis wasn't on the table).

- I'd suggest asking the doctor who will perform the LP how many times they personally have performed the procedure, and if any long-term complications/issues have ever been caused by an LP that they performed. Our doctor was upfront that she had only performed the procedure seven times in her career, and while none of her LPs had introduced any long-term complications/issues for the patient, she had only been able to successfully perform the procedure less than 50% of the time. We let her proceed nonetheless, and we were fortunate that she succeeded in her first attempt. In retrospect, I think that we probably should have asked as politely and emphatically as possible if there was anyone else available to who had performed the procedure more times -- seeing the post above from the neurologist made me think that our doctor was really quite junior at the procedure. Of course, it's a pretty unfair thing to ask of the doctor -- how is she supposed to learn how to get proficient at the procedure if everyone requests someone who is more experienced? Alas though, it's your baby, and you feel like you want the lowest risk of complications possible.

- My other piece of advice is: If your sub-90 day old baby feels a little hot, react quickly. Take his/her temperature right away, and if it's over 100 degrees, call your doctor immediately, no matter what time it is. It's scary to think that other than him feeling a bit hot, our son was in a serious battle with bacteria internally and was showing no other signs of a distress. Be vigilant about watching for fevers in kiddos at this age, as it might be the only sign you have that your child is sick.

Thanks again to everyone for the above posts -- they meant a lot during our time in need.
posted by JPowers at 6:50 PM on April 30, 2020 [13 favorites]

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