Can you refuse to have your baby admitted to special care? Can they force you?

[IlanaK]

Quick story: my baby was born last monday. Within a few hours, he was admitted to the neonatal intensive care as he was having breathing problems. He has been on special care since then until we finally convinced them to discharge us today. The breathing issues resolved a couple of days ago, but he was kept there due to needing iv antibiotics. While there, his bilirubin levels were checked as he was a little jaundiced. He ended up needing phototherapy on and off. His levels finally came down low enough today to take him home, but a final blood test result shows they are rising a little again. We are due to return for another blood test tomorow afternoon.

I DO NOT want him readmitted. I said to the doctor on the phone today that I would come in for the blood test and if she felt he needed further phototherapy I would stay for the 6 hours there with him then take him home. I would return if a further blood test was needed. She would not committ to agreeing this. Can I refuse to have him readmitted? Can they force me or am I within my rights to decide this as a parent?

Any help really appreciated.

Sounds how my baby was - born at 37 weeks and breathing difficulties followed by jaundice so a week in NICU.

Breastfeeding as i'm sure you know will help with the jaundice - hopefully it'll have improved by the time you go back for the blood test.

They were very strict though when they discharged me as they said that their experience was that if babies weren't totally well they usually just ended up back in nicu a few days/weeks down the line.

However they were happy to discharge me despite poor weight gain as long as i agreed to certain conditions like seeing hv all the time!

He may be totally well apart from the jaundice, but he hasnt been as well as a totally healthy baby very recently, so presumably if they say they need to keep a closer eye on him regarding the jaundice then it would be a good idea to let them.
Why do you not want him in special care?
Is it not worth a bit of inconvenience for peace of mind that you have done everything in your control to keep him well?

The doctor mentioned home phototherapy to me on the phone - not saying I could have it, but that it has been done in special cases in the past. Since I am perfectly willing for him to have it during the day on special care while I sit with him, they have two alternative options.

I am not sure why people are still trying to tell me how dangerous it is not to have him treated. At no point have I said I will not have him treated, just that I do not want him in special care over night as an inpatient.

Incidently, the special care unit I am talking about (UCLH) is not full.

oh x-post. so they are worried that you are going to refuse to admit him whatever. equally you are worried that they will insist on admission. wait for test result and decide?

No, I have never heard of phototherapy being performed at home. They will want to monitor his billirubin levels, and then when he gets to two weeks old, they would do a prolonged jaundice screen. My DD had to have one. At that point, if there are no worries from the prolonged jaundice screening, they would discharge him from hospital follow-up, as the jaundice is no longer effectively treated by phototherapy.

But I assume they will want him admitted to monitor him as well as the phototherapy treatment.
You can have the treatment at home but there will be no medical specialist monitoring him, which is more dangerous if he requires the monitoring..

But would your issues re admission be resolved if you were able to room in with him?

Ds2 was treated for jaundice in SCBU, and when he came home after 10 days, he was still quite dark. AFter a week his eyes were yellow, he looked very dark, and wasn't waking for feeds. I went to see the HV and she phoned the hospital. I was told to go to A&E where he was checked and they said that if the jaundice was still there after 21 days then to go back. I put him in his moses basket on the coffee table in front of the window every day, (not much sun in october tho lol) But it worked.

And I have to beg to differ regarding your assessment of the unit not being 'full' - just because it is not at full physical occupancy, does not indicate that the unit is not 'full'. There are lots of factors that determine the number of babies they can have at one time, including the dependency of the babies already there. If they are offering a bed, then they feel that your DS truly needs it. But that doesn't mean that you don't have a say in his treatment.

I agree with lou...bed spaces are sometimes kept empty on nicu's for emergency admissions, you never know when a sick baby will be born. Also staffing is a factor, if there arent enough staff they cant have full occupancy ( in theory anyway)!!

So you want a medical team to set up the equiptment at your home instead of hospital ?
Why is that - so you can sleep in your own bed and be more comfortable.
Do you not think everyone would prefer treatment at home?
The NHS cannot afford that or else it woul gladly offer it to all , esp the sick and elderly who actually cant travel a lot of the time.

unlikely he would be readmitted to special care.They don't readmit due to infection risk. You would go to paediatric ward and be in a sideroom.
Have never heard of phototherapy at home and been paediatric nurse 20 years.
I think if the doctor decides it is necessary to hospitalise then you should trust their judgment.
And yes,you could be deemed to be 'harming' your child by refusing appropriate treatment and an emergency protection order could be enforced.

Silent Terror has been too long on the job!
My little fella was born at 33 weeks and weighed 3lb 9oz went to scbu, fortunately i was ill, but not ill enough to be able to rescue him from their incompetence! To be succinct, he was kept too hot, i was handed 'milk' ina syringe to put down his tube that was boiling, and i mean 'hot'!!!
Although small he was breastfeeding fine, they wanted to keep him in until he reached some magical weight that they had decided was about 5lb. Forget it, i insisted on taking my son home, and they actually admitted it would never have been a problem if they could have afforded community neo natal nurses! As it was we compromised with me agreeing to the midwife then health visitor to visit daily and weigh my son. Suffice to say once he came home he gained weight rapidly, and all the bul.... of my son being small and may get infections, was never going to happen at home only at hospital. Don't believe that you should always trust a doctor, but you need to know enough to be confident in any decision you choose.

I COMPLETELY understand your reluctance to having your baby readmitted if the care can be done on a day visit. The English hospitals and maternity wards that I experienced were FILTHY, understaffed, noisy and generally not conducive to rest or improved health and I would not want either me or my child or anyone I cared about to spend more than a minute longer than they absolutely had to in an English hospital.

Hmmm, I didn't insist on DS1 being removed from SCBU (although I wish I had!), but I did get him discharged against medical advice. The medics were really quite rude about me doing this, and it was a real fight. If I hadn't had my own midwife, to back me up, I don't think I would have dared.

(They were a lot more relaxed about me discharging myself against medical advice.)

And, afaik, there was never any HV/SS sort of payback or concern after I did this. They did just want to keep us both in hospital for observation, but I'd had more than enough ...

Thank you for all your input last night. I don't feel the need to justify my reasons for not wanting him in special care as an inpatient, and it certainly has nothing to do with my own comfort (quite a rude and insensitive thing for the person who suggested that to say).

I will wait and see what happens with the blood test today. Thankfully, I have both confidence in the doctor's medical abilities as well as her understanding of my reasons so we may be able to work out an alternative.

For those who confirmed my legal position for me, thank you - that was very helpful.

I can't help you with your question as I have had no experience but would just like to say huge congratulations on the birth of your little boy.

DS2 was discharged from special care in similar circumstances and I was monitored at home.

I was told by the consultant to place him to sleep in the garden or near a window but not in direct sunlight to to up the UV when we were home. It was difficult since he was a christmas baby but we managed to survive on a series of blood tests at home and no readmitance

Good luck

Having had poorly children all I can say is I cannot for the life of me understand why you wouldn't want your baby admitted if the professionals felt that was necessary.

what if something went wrong once you got home?

what a massive regret that would be

i feel you are being very selfish not wanting your baby admitted - as advised by medical staff. dotn you want the best for your baby?

the doctors are the experts. if you think you know better, then good for you.

i hope all goes well x

Am sure that if you are willing to take him in for treatment (on a daily basis if necessary) and check-ups, they will compromise with you.

We had a kind of similar siuation when our twins were tiny - one was considered ready for total discharge and the other was not quite ready, ie, needed some further monitoring and checks by the consultant. The hospital's first suggestion was that one twin should go home and one should be kept in but we live near the hospital and begged to be allowed to bring him in on a daily basis for routine checks / treatment as necessary. The docs agreed that was fine - in our case no actual treatment or monitorng was happening at night anyway.

Logistically would have been a nightmare having the boys separated (I was BFing at that time) and v stressful for me and DH to be apart. I guess each case is judged on individual merits but I'd be amazed if they would go to court to "force" you to keep him in unless they feel it's ABSOLUTELY necessary, in which case they can explain their reasoning and you, as the mum, will want to comply in the best interests of your baby.

IlanaK - I totally understand your reluctance, and I have had quite an in-depth experience with a poorly child who was treated by the NHS.

I am not going to NHS bash, but there are so many rules and protocols that sometimes they forget to think outside of the box.

Speak to your Consultant and have an in-depth conversation about your options. The biggest questions that springs to my mind is what will they be doing overnight to your ds that can't be done at home? Is there any immediate risk to your ds by you being at home overnight?

When you sit down and have a conversation with the doc's you will often find that they haven't even thought about the alternatives. A lot of them also don't realise how stressful it is to be away from your child, especially if it is not strictly necessary.

Good luck to you and your ds

NailPolish, that post is just pure venom and really doesn't help the situation. Do you really think that there is anyone else on earth who has more of an interest in their child's health than their mother?

I don't think nailpolish was speaking puire venom. It is a valid point. A new mother is already planning to refuse specialist care for her baby and we have concerns.

pure venom? i dont think so

just mild anger