To challenge doctors decision re baby's care?

[codenameduchess]

DS was born Monday, has been in scbu since but released earlier today. Plan was we'd be on post natal ward while he has some light therapy for jaundice and then go home when we had the all clear from that.

All other tests have come back clear- he'd had RDS but breathing fine now, blood tests show no infection, blood gasses fine. Tonight his nurse has asked 4 doctors for a decision on if the antibiotics he'd been on could stop (given on day 1 as a 'just in case', never any infection markers or signs of infection seen). 3 refused to comment and one has said to carry on with IV antibiotics 2x a day for 7 full days, so ending Monday evening with a view to discharge Tuesday (probably Wednesday because they are soooo slow).
Now, I feel like this is a waste of time and resources, his nurse agrees. Why does a patient with no infection and no signs of infection need more antibiotics? As his mother do I not get to be involved in that discussion?

WIBU to say I do not think he needs these antibiotics or to stay in hospital taking up a needed bed for that much longer when really we could go home now.
Or request a non-IV option that we can give him at home/return to hospital for the doses as we both drive and live nearby.

I know it's caution because he's newborn, but he's never had an infection and the doctors have said that so why is he on medication to treat something that was never there?

Echoing what a PP said above - I’m pretty sure if you leave against medical advice, they’ll either do their best to stop you or call social services. When DS was born, he had to stay in for nearly a week, and I was going out of my head wanted to get home... I never tried to leave but I did ask what would be the consequences of leaving AMA and that’s what they said.

The antibiotics might be controlling the signs of infection though. So he should continue

I was given no choice and felt bullied by paediatric nurses and my son had antibiotics intravenously despite no signs of sepsis. They told me it was their call not mine.

If you had suspected sepsis then that’s probably why they are treating you baby. Infection in babies doesn’t always show until it’s too late.

I think you need to ask to speak to the doctor so you can get a clear idea of exactly what is going on. I think the nurse has been unprofessional to give a contradictory opinion to you in this way - she may not have all the information or training to know the reasoning behind the decision.

I really, really wouldn't try to stomp your feet about this.

I know being in hospital is frustrating (I had to wait 2 weeks for DD and I to be discharged) but they're doing what's best for your DC. It's important that he finishes any antibiotic course he's started, as per the normal advice - finish the course even if you feel better.
It may just be preventative, but the doctors know what they are doing and have worked extremely hard to learn what they know. I would trust them.

You can, of course, ask to speak to the Dr in charge of DCs care and, if they're difficult to contact, go to PALS.
But they can stop you from leaving the hospital with him, as others have said, with a visit from SS.
It's not worth it.
Tiny babies get poorly v. quickly and they mask being poorly v. well. I wouldn't take that risk.

Just a few more days and you'll be home.

I do feel for you - I had twins in hospital for over 2 weeks with nothing particularly wrong with them - just born a bit early - and the communication was terrible, with the consultant on holiday after the first couple of days and the 'named nurse' too. It was a really difficult time. Towards the end there was a lovely sister who was good at explaining things and knew what to do and what to ignore and got the discharge sorted out sooner. Keep chatting to them all and you will find one!

As for the antibiotics - I would always complete the course even if there does not seem to have been much wrong in the first place. Been on the wrong end of repeat infections too often.

Hope you are both out soon, and fighting fit

'State clearly that you do not understand your baby's treatment plan and therefore you are withdrawing consent for further treatment with immediate effect. The hospital then has to either stop the treatment or get a judge to overrule your decision. I think you'll find that the consultant makes time for you pretty quickly.'

What foolish advice. Make threats, behave like a bully and potentially put your baby at risk.
They are very likely to be following protocol with the antibiotics.
You are very reasonable, to want to speak to the doctor in charge and understand the rationale for the treatment and the risks of stopping the course prematurely.

hey OP, I massively feel for you. This happened with both of my kids and was part of the PTSD I had after my first, as I felt she was put through the course of ABs for no reason. She did have an infection although the CRP was very low (compared to mine which was really high!).
Anyway, with DC2 I went down to NICU and asked some searching questions of the dr. She went off and found someone more senior to come and answer my questions and I gave consent (I always was but wanted to be very clear I understood).
Drs are extremely cautious re babies and infections now - all the babies in my ante natal group had a course - one because of a mark on his face. It really is better than the alternative, but I truly do understand your frustration.

I have a preterm baby recently discharged from SCBU. Unless it differs between trusts, suspected sepsis (based on risk factors) in a neonate is likely to be treated with 2 sorts of antibiotics for 48 hours after admission, while they culture bloods and test for infection markers. This is what my DS had, and then antibiotics stopped at 48 hours when all results were negative. So if I were you I would be finding out why your baby is on a 7 day course of antibiotics. In the units we were in, the nurses would have been liaising with the doctors and able to answer this question.

To answer a pp question, you can't use oral antibiotics in a newborn - they don't absorb it as well as older babies.

congratulations!
Let the Doctors do their job. They’re all wanting the best for your baby. I imagine it’s frustrating to not go home, but they’re being cautious for
a reason. Unless you’re a medical expert, I would be grateful for the Dr’s help and try to get your questions answered clearly.

@lookatthebabypenguin

You sound very bitter! The OP did not say that she had asked four doctors and only got an answer off one of them, she said the nurse had asked them. Tonight. If the nurse is questioning the decision of the doctors then the OP is perfectly within her rights to ask to speak to the doctor. However, in what is potentially a very busy NICU the doctors are not always in a position to stop what they are doing to answer a parent's questions.

OP, once you are able to speak to the doctor, you will probably be able to understand their reasoning. You're most likely stir crazy at the moment, but it will soon pass and you'll be safe at home snuggling your lovely baby.

I was in hospital a week after my twins were born at 38 weeks, one had jaundice and then they had feeding problems and lost loads of weight. I felt exactly like you do, desperate to get out, really miserable really talked down to and completely sleep deprived/not looked after. Firstly, You are recovering from a major life event and it is not surprising you feel very stressed by all this - I don't think doctors remember that the mothers they talk to have just been in hospital themselves and are recovering too, it is not when we are feeling at our most calm and neutral. let alone worrying about the baby themselves. I think looking back, just grit your teeth, keep feeding, don't give up on the tongue tie referral (you might find it becomes important in a few months or weeks, sometimes latching can get more difficult, and tongue tie can affect speech too later on as a toddler young child) try and relax and enjoy enforced time spent in the hospital with the baby to some tiny degree (I now look back on it as a bubble where I at least didn't have to do any housework or deal with visitors)
Very best wishes

I feel for you, me and DD had to stay in for almost a week when she was born with a suspected infection for her: IV antibiotics, spinal fluid drawn for testing, lots and LOTS of blood tests. I don't think it turned out she ever had an infection, or if she did, the antibiotics sorted it before she became ill.
I was tearing my hair out at times from lack of sleep and wanting to go home but you really do have to go with what the drs have said, they won't be treating your baby for shits and giggles, but you're right and they really should explain everything to you. I hate to say it but the nurse who was disagreeing with the dr and questioning their decision sounds unprofessional and unhelpful, maybe she was trying to be sympathetic as she knew you wanted to go home but I don't think she helped you.
I'd accept that you're in for a while longer and push to have a discussion with the consultant when they can to explain things properly.
Congrats on your baby! You'll be home some time soon and then it will all fade away and it will only have been a small blip

I also disagree with PPs and I don't think you can shout about 'shit doctors' when they're treating her baby for a suspected infection. Shit at communicating maybe, but shit doctors? I don't think so

Sounds like the crux of the matter is the lack of information given. You have every right to ask what they are doing and why and they should be explaining it to you. It doesn’t hurt for them to explain what they’re doing nor should it be an issue.

Ask them again or ask your partner to talk to someone higher up if they still aren’t telling you.

My youngest was given antibiotics despite testing negative for strep B and the doctor was happy to explain to me why. It is good to know what is being done and why. Doctors can and do usually have the best interests at heart, but they can also make mistakes and it is best that doctors and patients are informed and on the same page.

@phoenixrosehere can I ask what the reasoning was for giving antibiotics even though your dd tested negative for step b?
My ds spent a week in nicu he had some issues breathing - he had a pneumothorax and was whisked off to nicu. They started him on antibiotics immediately thinking he had an infection and I also had strep b. His antibiotics were stopped after 5 days though when the blood test was negative for infection. Infection would explain him symptoms

Congratulations!

Sounds like they can't guarantee he's completely OK so would rather be safe than sorry, which for the sake of a week in hospital I would agree with. None of those doctors want to be the one that says "yeah, stop it" in case it backfires. Infection for a newborn is incredibly dangerous.
I was in for 10 days with my twins, it is incredibly frustrating so I do understand.

Tongue tie doesn't just affect feeding, and isn't always immediately apparent. I was told it can affect speech in the future depending on severity.

Sounds like no-one is communicating well with you.

I was in for 6 nights after DS2's birth. He was on antibiotics from 20 hours old for suspected neonatal sepsis. He was very poorly in the first few days but improved from around day 4. 5 day course of IV ABs.

They don't do it for the craic. Ask questions but go with it I'd say.

There is always a process for escalating a concern to a doctor. Ask what it is and use it.

DS was born at 34 weeks, he had very low blood sugar and was put straight on antibiotics. They were stopped immediately when his results showed no infection.

So it's definitely not the case that they have continue the abx once started. Additionally DS later failed a hearing test (although this is believed by the doctors to be due to glue ear) and the hearing technician told me the abx they give newborns can cause hearing loss. Of course I would have always rather mild hearing loss than sepsis but treatment is rarely without side effects so of course you don't want to give your baby unnecessary medicine.

Hi, I've not read all the responses and I don't know if this has slant been said, but my baby was put on antibiotics for 5 days the day after she was born. I was advised by many (but no one in the hospital) to get her some pro biotics once we were out to replace the good bacteria that gets damaged by the drugs.
Hope you're home with your baby soon.

I had sepsis (from womb infection) during labour. Baby born with a temp and infection markers in blood tests. He was on iv antibiotics for 48 hours I think. They tested him after this time and His infection markers were down enough that they were happy to stop antibiotics. So it would seem weird that they would keep your baby on ab’s BUT I would always trust the docs decisions, especially if 4 have reviewed him. When you say they have ‘refused to comment’ what does this mean? Does it mean they just haven’t reviewed the case? You may have an entirely different answer in the morning but prepare for the long haul. Both my babies had jaundice that needed treatment and we were in for 5 days. At the time I hated it but it gave me the chance to establish feeding so I was grateful in the end.

I was in NICU for 4 months in total when my twins were born (preemie and low weight) and I understand your frustration at the lack of communication, but from my experience it’s always a better safe approach with Antibiotics, even if an infection isn’t present when testing there are chances that it hasn’t developed enough to be picked up by testing yet, or that they risk picking up infection whilst in hospital, so whilst your Baby is recovering from the Jaundice treatment they will want to have as many scenarios accounted for as possible.

I was in a constant flux when my two were in NICU, but I trusted that the nurses and doctors ultimately had a better handle on what they were doing than I did.

I stayed in 3 NICU (SCBU) areas over the course of that 4 months, due to space requirements and my having two babies that they wanted to keep together (for my sake as well as theirs!) and found that the minimal contact with parents was fairly common, during daytimes especially, if a doctor sought you out specifically to discuss - that’s when you panicked.

I know you desperately want to be home with baby as there’s nothing quite like being watched like a hawk with a new baby who has been a bit poorly to really put the pressure on, I hope you’re home soon with your DS and congratulations

The doctors stopped his antibiotics a few days ago, then restarted but without telling us why and there was never a course or duration defined, so it's not that he needs to finish a course surely if they were happy to stop before and had never said how long he needed them for- the nurses have been amazing and kept me updated with what they know and answered my questions (or asked the doctors for the answers because they hadn't provided them, this isn't isolated to us). As I said he's not had any sign at all of infection and 3 lots of cultures have shown that, he's not symptomatic in any way.

I'm more annoyed now that we haven't been told about the treatment plan, of course I'm not medically trained but a doctor should be able to say to me 'your baby needs x,y,z for this reason and this is what will happen'. The ones that have actually spoken to me haven't explained anything even when I've asked very specific questions. One referred to him as her for a whole conversation and got so many details wrong I believe she was talking about the wrong baby even when I corrected (eg. 'She had a really low birth weight and you were induced because of that', when I said 'no, he was a big baby and I was induced because of that and my gestational diabetes' the doctor still went on about the tiny girl).

I've had a chat with one of the specialist nurses and she's said it's definitely worth talking to the consultant tomorrow and getting clarity/second opinion. The info passed on is so bad the nurses on post natal have no idea what he needs.

Also I never said shit doctors, I'm not impressed with their communication but that's it.