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?

I understand what the IV antibiotics do, but he's never been symptomatic and bloods always clear soon don't even know why they were started and no one seems to be able or willing to tell me. If he'd had an infection, or showed signs of one or was in anyway unwell I would understand it but he's had the all clear- even the notes moving to transitional care don't reference antibiotics or a need for them.

The doctors aren't good at communicating, several times have just talked like I wasn't there.

Now apparently he's been referred to get a tongue tie cut but that's never been mentioned either. He's feeding fine so there are no issues with it.

You have received conflicting advice and poor communication. It's very simple. "May I please speak with the consultant in charge of my baby's care. I am not happy with the communication I have received and the fact that a nurse has contradicted and undermined it"

Oh and he never had suspected sepsis, I did after birth but again I wasn't told!

Congratulations on the birth of your little one, glad he has escaped SCBU!
Generally paediatricians have a list of criteria/risk factors for how long to give iv antibiotics for. Risk factors include preterm labour, prolonged rupture of membranes, mum having a fever or fast heart rate, baby having a fever, baby appearing unwell soon after birth (even if they get better quickly) and so on and so on.
Neonatal sepsis is rare but horrible as new babies are so fragile and can die or be seriously and permanently affected by it. As such we have a very low threshold for treating even babies who seem well. A term baby who’s needed SCBU treatment when this wasn’t anticipated potentially ticks quite a few risk factor boxes and as such warrants a treatment rather than a prophylactic course of iv antibiotics

You have every right to question the treatment plan and the doctors responsible for your baby’s treatment should be available to speak to you and explain their reasoning. The postnatal nurse will not have the same level of experience at looking after sick or potentially sick neonates so won’t be in a position to explain to you. However we don’t keep babies in hospital when it’s not deemed necessary (and much as it’s taking up resources, a baby being re-admitted with partially treated meningitis due to gp B strep or E. coli for example will use a hell of a lot more resources!)
Hope you’re able to speak to the doctors soon and get a better understanding of their plans and that you get to go home and enjoy your little one very soon

Once a course of antibiotics is started they do always need to be finished, as horrible as it is. My daughter was admitted with suspected sepsis when she was 4 weeks old, it was an absolute nightmare to even get the cannula in they eventually got it in her foot, we were allowed to come home on day 2 but had to bring her back for the rest of the antibiotics but then the cannula moved and they ended up having to inject each time which was awful for her and caused so much distress. If he needs IV antibiotics I really do think hospital is the best place for him, it's not nice having a baby in hospital but it really will be over before you know it

My middle child was admitted aged 3 weeks for three days of IV antibiotics after I took him in with absolutely nothing wrong except a too-fast respiratory rate. He was by far the most well baby on the ward and I felt a complete fraud, but if there had been an infection (a chest X-ray was inconclusive) the consequences of letting bacteria multiply unchecked could have been horrific. He's 12 now and it's a distant memory, as it will hopefully be soon for you. It's a complete PITA to be stuck in hospital, but I would go with this.

Nurse here! If the medical decision is to give 7 days of antibiotics, there must have been a reason for this. I would compromise and try and get discharged as soon as baby has had their last dose, so Monday evening xxx

Sepsis can kill. My dd2 had sepsis in March. Let them treat as a preventative measure. This is a tiny amount of time relative to the time you will get with your baby. Do not rush baby home. Trust the doctors.

The course also needs to stay in the same format I believe (ours did).

I totally understand the wish to leave hospital asap! Not to be rude, but I don't see why you think you know better than the doctors or why you would expect a say. Why is your opinion worth more than any other untrained person? And parents don't actually have the right to decline treatment on behalf of their children. You should however ask for a proper explanation. A nurse or midwife can probably do this.

They don't do this for fun, finish the course .

Ah, maternal suspected sepsis is definitely a risk factor so if it was me I’d want my baby to have a decent course of iv antibiotics (am a paediatrician and mum of baby twins (and was stuck in hospital for a week and was ready to escape out the bloody window by the time I was discharged!!))

I am a nurse (adult) and my experience is that they don’t give out long courses of IV antibiotics lightly. There are guidelines and protocols to follow, microbiologists that advise the doctors what to give, review dates etc.

They need to communicate better and let you know the rationale for this. You are not wrong to question why something is being done to your child. As others have said, ask the nurses to arrange a meeting with the consultant. If it doesn’t happen then contact PALS and ask them to facilitate this.

The fact that you said they asked 3 doctors to review the antibiotics suggests it probably wasn’t the consultant that reviewed them. You’d probably be hard pressed to find a junior doctor who would stop the antibiotics without a senior review. Maybe they need to re-review with the consultant on the ward round tomorrow.

Don’t be fobbed off, you deserve answers!

As his mother do I not get to be involved in that discussion?

Does giving birth give you medical knowledge? As a mother I relied on the informed opinions of the professionals.

Congratulations on your baby. Are you really unhappy over doctors wanting to do belt and braces re your baby’s health. Surely you should be grateful they are airing on the side of caution. They know what they are doing. You have to trust them. It would be highly irresponsible of you to insist he doesn’t need the medication and take him home sooner than the doctors advise.

Actually imagine the reality of walking out of that hospital with your new born knowing that:-

1. you have overridden doctors advice;
2. your baby didn’t complete a course of antibiotics (which if you’re wrong then pure your baby at very significant increased harm)

A lot of people with different conditions get given antibiotics while they'rein hospital, just as a preventative measure. You wouldn't want him to catch something in there because you didn't bother, would you?

But I can understand you wanting to be at home.

Your best bet is to try and speak to one of the doctors and get them to expain to you why he's on the antibiotics.

OP, having a sick child is so worrying. But...

I'm out of hospital recently myself after 5 days of IV antibiotics. I totally get where you're coming from about communication and crossed wires - it's a huge problem in our overstretched NHS (and generally not individual members of staff's fault - they simply don't have enough time on the stretched critical wards to do proper communication with each other, never mind the patient...)

But - 5 days of IV antibiotics, white count and inflammatory markers back to normal - I'm still on another 7 days of two very strong oral antibiotics (which are hideous and making me puke my guts up) because they're not taking chances even with a robust adult.

Listen to what they're saying about your newborn, and give the antibiotics (even though they're shit as an experience and can have side effects - it's still better than sepsis).

Ask for the consultant to talk to you. Hopefully they know more than you about what's best for your newborn.

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.

When you have the consultation push back on every vague statement with repeated requests for actual evidence and facts. Write down what is said and read it back to the consultant to ensure you've understood properly and get their agreement that it reflects the whole picture.

Yes, do that.

And take valuable time away from the doctors that was earmarked for other babies care

Tomorrow morning I would ask the Nurse if your baby can be reviewed by the on-call Consultant or other senior doctor to see if antibiotics still needed.

If your nurse asked three doctors who couldn't comment, she has presumably asked doctors who were unable to make that decision - perhaps too junior, or from a different team. With a tiny baby, decisions would be made at a senior level.

As it's the weekend now there will be fewer doctors available, so I'd wait till the morning and ask first thing if baby can be reviewed.

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.

This is completely untrue, so please don't do this.

Oh gosh, yes, the weekend! I got admitted early on in the weekend and it's a nightmare, because there are very few specialists on (hopefully paeds is an exception to this), so they couldn't do emergency surgery, and by the time Monday rolled round everything was too inflamed to do it safely, so I now have to wait for elective surgery.

AnyFucker is right, if blunt. Your baby is (hopefully) a long way from being their most serious case. You probably just have to wait it out patiently (and trust me, I know how that sucks, I have been there all too recently).

But the risks to having a hissy fit and withdrawing treatment (which will basically allow all the more drug resistant bugs to breed away happily unchecked, resulting in a second infection which will be much, much harder to treat) are too great to chance it IMO.

You appear to know something and nothing.
How do you know 3 doctors refused to comment?
How do you know that his bloods are perfect?
Why was he admitted to SCBU in the first place?
Was he full term?
Have you spoken to a doctor or just a nurse?