# Cranial scan???



## bumpsmum

Daniel has to go for a cranial scan on we'd at X-ray dept of our local hospital. Has anyone's lo had this done? If so what's it for and what can I expect? Daniel will be 36+4 then when I asked at Nicu before discharge what it was for they just said 'to check he has developed fully'. Matthew, my other prem lo didn't have this scan but Daniel was 10 weeks early rather than the 7 weeks so wondering if it's a gestation thing xx


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## Sam182

Alex has his tomorrow. They just told me it's to check the brain and make sure it's developing correctly. I'll let you know what they say if you like x


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## bumpsmum

Thanks. Say hi to Pauline, Andrew and baby Andrew for me if u see them x


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## Jen1802

Juno had this the morning of her discharge and I was told it was because she had, had brain flares and a grade 1 bleed in the first week after her birth and it was to assess the ventricle development and what impact the bleed may have had. I was told the ventricles looked to be normal and although she had, had frequent ultrasound scans in nicu and scbu the x ray department had a more thorough machine and would show everything up in greater detail. I was a bit pissed at the time though as no one bothered to inform us that she had, had a brain flare or a grade 1 bleed, it was literally on her discharge day they told us about it. Good luck! xo


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## bumpsmum

I'm beginning so notice at nicu don't tell parents the full story until they need too! There was no mention of Daniel suffered any bleeds etc but I am worried about cerebral palsy as his wee legs are very rigid and difficult to straighten out at times - hoping its just wind related x


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## Sam182

I will do :)


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## Foogirl

I would think the reason you are going for a scan is because he wasn't in long enough to have them all in hospital. Abby was scanned three times in NNICU. Matty and Daniel will have had scans whilst in hospital but if there were no issues you probably weren't aware they did it, it is entirely routine. I can almost guarantee of a bleed was found, you would have been told.

CP would not manifest itself with stiff limbs at such a young age. It pretty much only becomes a problem beyond a year old. Abby always had quite floppy limbs. Only later did the stiffness come in.


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## Sam182

Alex had his PVL today. It was an ultrasound of his brain. They said it's routine for all preemies to make sure their brains are developing correctly and that there are no bleeds etc. Alex was given a clean bill of health which is great news. Pauline said hi x


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## Marleysgirl

Andrew had three or four u/sound scans of his head while he was on NICU to monitor his pre-birth bleed (and presumably check that another hadn't happened). They actually wheeled an u/s scanner alongside his incubator & cot, did the scan in situ. 

He had one MRI scan also when in NICU, this was to determine whether the bleed was on the brain side of the membrane or the skull side.


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## Jen1802

bumpsmum said:


> I'm beginning so notice at nicu don't tell parents the full story until they need too! There was no mention of Daniel suffered any bleeds etc but I am worried about cerebral palsy as his wee legs are very rigid and difficult to straighten out at times - hoping its just wind related x

I certainly noticed it and obviously was pretty cross we hadn't been informed of the grade 1 bleed when she was first born and then the subsequent brain flares during the following weeks she was in NICU. They were thorough with their scanning and she was scanned pretty much every week whilst in NICU but it was just a total lack of communication between the consultants and ourselves as her parents that pissed me off. In fact that was one thing I still don't understand about the set up of the nicu and scbu our daughter was in. Unless we specifically requested meetings with her consultant or another dr it was always left up to the nurses to give us a quick run down of what had been happening and again sometimes they couldn't tell us things as it was the drs decision as to what would happen in regards to her treatment. I think that the parents as the childs only advocate in this time should have routine meetings on a weekly basis with the drs as a matter of course. Sorry for the rant, your reply just reminded me off how stupid the system was, our daughter was in hospital for 9 weeks, NICU for 6 and SCBU for 3 and in that time the consultant met with us just once after we requested to speak to her having not even met her for the 7 weeks our daughter had been in her care at that stage. It was also at this meeting we had been told she had a heart defect even though her heart scan had been done 4 weeks previous...grrr! XO


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## Marleysgirl

We saw Andrew's neonatal consultant quite often when he was in NICU, I'd say it was at least twice a week. If we ever wanted to see her for a specific reason/question, the nurses would pass on the request and she always made the effort to come and answer whatever it was. Maybe we just made more of a nuisance of ourselves, but I never felt as if she wasn't communicating ... Well, except for that one time when they tried to move him to another hospital :rofl: Nobody communicated with us about that, but boy did we make our opinions known :rofl:


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## Sam182

How did it go? x


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## Jen1802

Marleysgirl said:


> We saw Andrew's neonatal consultant quite often when he was in NICU, I'd say it was at least twice a week. If we ever wanted to see her for a specific reason/question, the nurses would pass on the request and she always made the effort to come and answer whatever it was. Maybe we just made more of a nuisance of ourselves, but I never felt as if she wasn't communicating ... Well, except for that one time when they tried to move him to another hospital :rofl: Nobody communicated with us about that, but boy did we make our opinions known :rofl:

Haha that made me laugh Marleysgirl! Can't believe they attempted to move him without telling you! I think different hospitals must just have different procedures in place. There wasn't a routine meeting held on a weekly basis with the parents in the neonatal Juno was in, which is what I think they should be doing. We weren't allowed in when the ward rounds were being done to even hear what was happening with Juno but I could totally understand and respect the reasons behind this in regards to privacy of the other babies health issues. However it seemed a bit stupid at the same time as we always chatted to all the other parents who's babies were in the unit at the same time as ours and so we knew everything that was going with each others babies anyway. However I thought it was ridiculous that they didn't tell us about some of the issues she had until weeks down the line, the brain bleed, flares and heart defect should have been communicated to us at the time and wasn't. We were just always told oh she's doing really well and they are really pleased with her. Then on her discharge day when I queried why she had to have a more detailed scan done the nurse said the doctor would come down and speak to me prior to her discharge. Of course I thought the worst, that something suddenly had happened overnight but when the dr came down he said oh no, the brain bleed happened in the first week and the following cluster of flares had been detected over a period of three weeks, when I asked why we hadn't been informed at the time, he shrugged and said that they were not overly concerned about it right at that point as it was the side of the brain which controls fine motor skills and they wouldn't be able to tell how it had affected her until she's a bit older. I remember being really annoyed at the time but was too distracted to make a huge fuss as she was literally in her car seat and ready to come home. XO


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## 25weeker

In the first Nicu we were in doctors round was at 2pm everyday and you were allowed to be in to ask questions but only when they were discussing your baby. You would stand outside the ward and they would call you in when they reached your baby.

I mostly got in first as holly was in incubator 1.

In the second one they didn't close the ward at Doctors rounds but each incubator had its own cupboards and drawers around it do it was a big area and not as easy for things to be overheard.


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## bumpsmum

Scan went well. Radiographer said there was 'nothing to be concerned about' bit vague she wasn't even able to tell me what the outcome of the scan would be that his results would go to the paed dr :shrug:

They were a bit unorganised was told to strip him and took me a moment to question why he was there, they presumed he was getting his hips checked :dohh: x


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## Jen1802

Ok that's what I mean about miscommunication! Ugh, hate the vagueness too. Well hopefully the consultant will meet with you and go through the results in greater detail but that's good that there doesn't appear to be anything to worry about! xo

25 weeker that is exactly the sort of protocol I would have liked in place for the neo natal unit my daughter was in. I'm not sure if it possibly came down to time constraints in relation to the doctors time or staffing issues but our daughter was in two neo natal units in two different hospitals and both had the same protocol - no parents during ward rounds, parents must make an appointment to speak to the consultant as there were no scheduled routine meetings and it was left to the nursing staff to give parents a run down of what had happened during ward rounds and what changes if any in relation to treatment. If we did have any questions they would make a note and let the doctors know at next ward rounds. In fact I remember being kicked out countless no of times even during the nursing staff handover again due to privacy and confidentiality. The only times they were flexible around this is if I were expressing for Juno or trying to get her to latch on. Its interesting to hear how different it is from hospital to hospital. I'm not sure if all hospitals in Northern Ireland operated this policy or just the two that we were in. xo


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## Sam182

Hahaha! Strip him for a head scan - they don't have a clue down there! They kept Winnie and I waiting almost an hour. Glad it went well x


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## 25weeker

My first neonatal unit was in Bristol and my second was in Edinburgh and they were vastly different down to had Holly had her PDA in Edinburgh she wouldn't have been treated for it and if it proved too much of an issue she would have had it surgically closed in Glasgow. However I know other hospitals in Scotland offer medication to treat PDA's so chances are it's probably different in other hospitals.

What hospital's were you in? I am from Antrim but live in Edinburgh now :thumbup:


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## Jen1802

I did a tour of 3 hospitals in the space of a week. My booking in hospital was the Ulster but they couldn't deal with a baby born below 28 weeks so I was sent to Craigavon. Within a day though a space had become available in the Royal's NICU so I was sent there. Juno was born there and then when she was stable enough they transferred her down to the Ulster. I don't know what Craigavon's policy is as I was able to get transferred to the Royal before she was born. xo


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## Foogirl

I'm a parent rep on a clinical network for west Scotland NNICUs and they are starting the same in the east and north. One of the questions which has arisen is around parents at ward rounds. Part of the reason for keeping patients out is privacy for other babies, but also it is generally felt there is so much medical terminology and often discussions that parents are sometimes better off not hearing as they would confuse and possibly worry them needlessly. That said, I was asked what parents wanted and from those I've spoken to, generally the feeling is that they want to be part of it. We suggested all parents clear the room but when your baby is discussed, you would be invited in. And consultants should change the way they do the rounds to be more parent friendly. But the problem really only comes about because we are not really kept up to date with what is going on, unless there is a problem, so maybe a solution could be a weekly appointment with your consultant to discuss the issues? What do you all think?

25 weeker, just occurred to me, we are looking for parents to be on the east Scotland parent network. Would you be interested? I know you work, but to be honest, that isn't necessarily a problem?


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## 25weeker

Foogirl Yes I would be very interested.


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## Marleysgirl

We were always cleared out of the room (8 cots/inci's) for ward rounds. I can remember kicking up a stink one day because I was trying to get Andrew to latch, and they insisted that I stop and leave the room for an hour. 

Ward rounds were held around 10:30ish in the morning, and late afternoon. We always visited lunchtime and early afternoon, so it didn't clash too much; the Consultant was in her office during this period and would either wander down to find us (having learnt our routine) or a nurse would go and fetch her. Her "be there in 5 minutes" turning into 30 minutes would drive me nuts, but that's just the kind of person she was - she was A's consultant until his 2nd birthday, and always ran late for his appointments.

Jen1802, the attempt to move A was stupid. Somebody thought that because of my home address, I should be in the neighbouring PCT & hospital once he was well enough to move. They were wrong, I was actually in my "local" hospital. But I walked in one day to be told by the nurses that they were moving him either that afternoon or the next day ... You can imagine my reaction !!! I think we must have told a dozen people that afternoon that they were wrong, he shouldn't move, and that we would never give our consent to the transfer. I even wrote it in huge writing on his notes for the day. Eventually one of the consultants (not our usual, she wasn't on) checked and apologised.


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## Lottie86

When Iona was in intensive care we could stay during the consultants ward rounds even when they were discussing the other babies, when she moved to high dependency you were not allowed in during ward round even when it was your own baby being discussed. It drove me absolutely mad! 

Once she was out of intensive care we never saw the consultants to speak to and the nurses generally just gave you a 'basic' update and depending who was on they often just read out the chart at the bottom of her incubator/hot cot to us which we were perfectly capable of reading ourselves whereas when she had had blood tests, cultures etc done I wanted to know what the numbers were, exactly what infection it was she had and detailed info which some of the nurses were never keen to tell me (a couple of the nurses said they were just not used to parents who were so clued up and understood specifics and they found it a bit unnerving)

Since we got transferred to sick kids Iona has always been in a single room (so we are obv always there for doctors rounds and they are quite happy to give me specifics as they know that that is what I want) but if she was in the 5 bedded bay then we would be allowed to stay during ward rounds even when they were discussing the other 4 patients in the bay.


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## Jen1802

Foogirl I think that is exactly what the consultants should be doing. I think a weekly one on one with parents should be standard procedure across all the trusts. Even if nothing has happened in the space of a week, it would be reassuring to know that should you have any questions you know you have this dedicated time that you can address them with the person calling the shots so to speak. 
Lottie86 that was the only way we were ever really given information about what had been happening with Juno, through the nursing staff. Don't get me wrong, in most ways I think they were the very ones who had a better idea of how Juno was doing as they spent the most time with her. The consultants came round twice a day but the nurses spent entire shifts with her and knew her better than the doctors and my personal opinion was that it was because of them and their daily observations that she was able to receive the correct treatment by communicating this to the doctors. Ultimately that's what the treatment plan was based on, what the nurses had observed over the course of the day. I also know what you mean about them being intimidated by clued up parents. When Juno was born I read books upon books about premature babies and complications, researched websites and of course came on here a lot and read through all the threads. It made me feel better to have this knowledge and understanding. I remember telling the consultant at the one meeting we had with her that I had been reading a lot and she said oh no, don't do that you'll just worry yourself, but if anything it made me feel the opposite! I can appreciate that she may be used to dealing with parents who immediately thought the worst case upon reading about the bumpy road ahead for preemies but I explained to her that not knowing and having her essentially "dumb down" and gloss over the ins and outs of complications worried me more than when I had a more detailed insight as to what Juno faced. I suppose they all just want to tar and feather us with the same brush and I know from being in the unit and seeing another particular set of parents that were in overreacting when their baby had to have photo light therapy because of slight jaundice why they maybe don't want us in during ward rounds. XO


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