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General health

bilirubin levels in a newborn

14 replies

lou33 · 01/07/2002 12:31

Just wondering if anyone has any idea about bilirubin levels in a newborn? Ds had a level of 347 and had phototherapy, but I was wondering what a "normal" level should have been? He is showing signs of cerebral palsy which i believe is linked to high levels so would be grateful of the info (re jaundice not cp) . Thanks in advance.

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bundle · 01/07/2002 12:56

Lou33, I'm not sure about specific numbers, but here's some general information about neonatal jaundice. hth.

jaundice

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leese · 01/07/2002 18:41

Dear Lou, whilst your sons bilirubin level was elevated, it was by no means an uncommon level, so try not to worry yourself unduly.
Basically, as a rough guide, a level over around 250 is usually in the 'phototherapy' range, although this does depend on the age of the baby etc. For example, a level of 347 in a baby less than 24 hours old would be classed as very high, and possible further investigations as to cause would need to be carried out. In a baby 3 days old or older, it is not so worrying so no further investigations would be necessary at this time, but phototherapy would be recommended.
Briefly this is because raised bilirubin levels (which result in that jaubdiced look), is the normal physiological process - jaudice usually becomes apparent around day 2-3, peaking around day 4-5, reducing by day 7. Therefore, if jaundice occurs outside of these normal parameters, it should be further investigated (ie before day 1, or if it persisting beyond about 2 wks of age).
PHYSIOLOGY: Whilst in utero, the baby has a very high iron level (hb), in order that he/she may attract enough oxygen across the placenta. Once born however, the baby no longer need this high level of iron, so these excess red blood cells are broken down naturally by the body, and a by-product of this process is bilirubin. Because the baby's liver is still immature, it cannot necessarily deal with these sudden levels of bilirubin, and consequently cannot get rid of it quickly enough. Excess bilirubin in the system therefore leads to this yellow tinge - normal physiological jaundice. This type of jaundice, which is by far the most common, can vary in degrees - some babies seem unnafected, others I fondly term as 'little corn fed chickens!'. Bear in mind, the worst the jaundice, the longer it will take to fully reced, so a very jaundiced baby requiring phototherapy will not usually be totally jaundice free by day 14.
Other types of jaundice are less common - they could be caused by infection, incompatability with baby blood group and your own, infection, prematurity or liver problems - all of which I must stress are rare. Similarly, those who remain jaundiced beyond 14 days old, and who have 'prolonged jaundice screening' are more often than not diagnosed with a form of 'breast milk jaundice' - a funny term, and noone really understands the whys or wherefores here - suffice to say, something in your breastmilk results in this jaundice, which is perfectly safe, and usually resolves within a few months.
Phew, hope this isn't too long winded!

Back to the original question. The worry with untreated high levels of jaundice, is that it could possibly cause brain damage - when levels of unconjugated bilirubin (ie the bilirubin not broken down by the liver) are so high they escape into the basal ganglia of the brain. This is called 'kernicterus', which would result in signs of cerebral palsy.
A level of 347 would by no means be very unusual Lou33, just treated with a stronger form of phototherapy I suspect, until it receded.
Just to say as well Lou, midwives and paediatricians all refer to a chart when deciding if a bilirubin level is high enough to treat/ observe etc, and these figures are in reality, very outdated. Newer research has suggested that we treat jaundice far too readily, and figures which we act upon are incorrect - in fact the research suggested that only when levels exceed 500 should we become concerned about side effects of jaundice.

Hope this has been of some help Lou33. Difficult to say what could have prompted the cerebral palsy, but I feel it is unlikely to have been the jaundice. All the best.

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lou33 · 01/07/2002 20:58

Thanks very much for that Leese, it makes things a bit clearer. You don't want to come and work in my area do you?!

My son was induced 4 weeks early and they spotted his jaundice when he was about a week old. He had phototherapy for 48 hours then took him off, and although his levels were going up and down without the therapy they didn't want to do anything else but watch him, so I brought him home again after 5 days. It was about 4 weeks before his sbr was down to a normal level, by which point they discovered he had a urine infection and failure to thrive.

He is now 16 months old, still not sitting, crawling, rolling over, has eyesight problems and possibly hearing too, has had fits, and his legs are extremely stiff, they just hang there like they are not connected to his body. We have an 8 month wait for an mri, and he has only had 2 physio sessions since i voiced my concerns 8 months ago. My paediatrician is almost no point in visiting because she just says come back in 3 months to see if he is any better, so I am trying to arrange a consultation privately with a doctor i trust with an interest in cp, to see if he can answer my questions. I called my paediatricians office today to try and discuss seeing my son sooner than they suggest because of my concerns, but have had no response. Obviously I want to arm myself with as much information as I can as she has a way of making me feel quite stupid, so your info has been a great help. Thank you so much. And thank you bundle for your link.

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leese · 01/07/2002 21:58

Lou33 - so sorry to hear all that - if I can help with any more info just let me know - Mears is good too!
Poor little thing didn't get off to a flying start did he? I suspect the fact he was early contributed to his jaundice. Why were you induced four weeks early if you don't mind me asking? What sort of labour did you have? Any problems?
The treatment he rec'd for the jaundice sounds par for the course - sbr levels will rise initially once out of phototherapy, whilst the body adjusts to doing all that stuff without the aide of the phototherapy.
Your concerns though are more than valid, and I'm shocked noone has taken more of an interest. Go private if you can - if not, shout like hell! Don't worry about being made to look stupid - some medical staff are like that, so ignore it. Start at the beginning and ask very basic questions, so you understand everything - and take someone with you - power in no's! Whereabouts do you live?

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PamT · 01/07/2002 22:10

leese, how awful for you, we all want to get the best help for our children and these stumbling blocks make it so much harder. You can often queue jump by paying for an initial consultation with a specialist and if he recommends further visits or treatment you will then get onto the NHS list above those still waiting for a consultation which can be helpful. Try to write your list of questions down in preparation when you do get an appointment, then you can be sure that you do find out what you need to know. I know that I get really flustered when the moment comes and often walk out thinking about all the things that I should have said or asked. Are there any local CP helpgroups? they might be able to show you the right direction to get help.

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leese · 01/07/2002 22:42

I'm sure PamT meant Lou33 there!

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lou33 · 01/07/2002 22:54

Thanks for your very supportive messages Leese and PamT.

To answer your question Leese I was induced for a variety of reasons. Firstly I have precipitous labours ( i have 3 others all under 2 1/2 hours) andhad previously delivered 2 at home by mistake, with the midwives only just making it to me! Secondly my children were all early, so my obstetrician was concerned that I would go into labour early again and deliver at home unattended, probably a tad more worried because all mine have had the cord round their necks and two of them lost their heartbeat during delivery. Also I had a threatened early labour at 30 weeks with my last (2 others went that way too) and although the contractions did ease off I continued to have bursts of really painful contractions leaving me unable to walk from then on. To be honest I was relieved to have him out! It was also just as well that I was induced in the hospital, because although I know inducing often speeds up labour, it seems likely I would have been alone as this time my labour was 22 minutes long!

I am definitely going to try to go private,I am just so fed up with the services round here. I live in Luton which has to be the biggest mistake I ever made, but we are supposed to be moving in the summer holidays to Surrey, so hopefully we will get a better quality of care. However I really want to try and get this started now otherwise I could end up at the bottom of a very long waiting list in another hospital waiting for them to repeat tests that have already been done.

Unfortunately my children haven't had much luck on the health front, in fact if I wrote it all down you would probably think i was making it up!
My oldest daughter was born with multiple problems , which thankfully she has mainly overcome, I have been told this week that my second child is possibly dyslexic, my third has a hearing test looming, and my baby has all the problems I have written about plus a long list of food allergies to contend with.

Sorry I have waffled on so long, but I guess your understanding overtones must have gotten to me! I will let you know any update if you are interested!

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bells2 · 02/07/2002 07:45

lou33 - it is very sobering to sit here and read of your difficulties and of the apparent indifference of the medical establishment. Hoping you get the help and support you need.

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bundle · 02/07/2002 11:10

lou33, the waiting must be awful..thank goodness for all that knowledge leese was able to pass on. I hope you do get some answers soon, hugs, bundle

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lou33 · 02/07/2002 16:22

Thanks again for your messages, it is really appreciated. A slight plus today is that my GP agreed to put a host of food on prescription for ds, so I can give him the equivalent of pasta, bread, pizza and the odd biscuit as a treat now, plus it saves me £2.50 every time i buy him a loaf of bread! Still no reply from the consultant in question though. I think a snotty phone call tomorrow is looming!

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leese · 02/07/2002 19:42

Really interested in this Lou33 - let us know how you get on.

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mears · 02/07/2002 21:27

So sorry to hear about all your difficulties Lou33. If you have no joy with your paediatrician it might be worth writing a letter of complaint to the Chief Executive of the hospital you attend. That is the procedure where I work. We have a complaints procedure which can be sent to you if requested. That has been known to get things moving. I really despair of the NHS when I read some of the threads
Good luck. Let us know how you get on.

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lou33 · 05/07/2002 16:22

Just a quick update while it is all still sinking in. Finally got to talk to ds paediatrician today. She was very understanding (surprisingly) and i got the impression that she was going to tell us on the next visit in august, but caved in and told me that my son does have cerebral palsy. Obviously I am upset, but I also feel relieved that finally there is something we can grasp onto, and societies we can talk to if we want.

I am still considering going privately to get a thorough assessment done though, just so we might get a clearer prognosis - although with cp nothing is clear it seems!

Thank you all for your messages, although I do not know you they truly stopped myself and dh feeling like we were going mad!

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leese · 05/07/2002 18:39

Lou - don't really know what to say in response to your news. I suspect you thought that would be the diagnosis anyway, but it must still be a numbing shock, despite the fact it answers SOME questions.
Were there any suggestions from the paediatrician as to what the cause of the cerebral palsy was? Would be very interested to hear any further follow up.

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