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Original poster

Blood tranfusions and CJD

21 replies

mieow · 16/03/2004 18:30

I heard on the radio this afternnon that anyone who has had a bood tranfusion in the last few years are being told not to be blood donors. My DD1 was given a blood tranfusion while in SCBU, without our consent and without our knowledge. I found out about it after the doctor told me the following day (the tranfusion happened over night) She had low iron, that all. Now I am panicking in case she delevopes CJD at a later stage..

OP posts:
Original poster
mieow · 16/03/2004 18:32

Its affects anyone who has a blood tranfusion since 1980

OP posts:
fio2 · 16/03/2004 18:32

mieow ((hugs)) please try not to worry I am sure they are doing it as a precautionary measure, not that it will make you feel any better. Rememeber she really needed the blood transfusion and who knows what would have happened without it. Please please try not to fret over this, I know how you must feel though.

nutcracker · 16/03/2004 18:36

I have always wanted to give blood but i can't because i have anti-C antibodies. Have to carry a card with me too, makes me feel a bit freaky really.

melsy · 16/03/2004 18:37

I assume that if u had one in last 6months u r ok???

mears · 16/03/2004 18:40

Mieow,
2 of my children have had blood transfusions which were necessary to save their lives. The health service has to do all it can to try and minimise the risk of any infections in the future. The risk of developing CjD is absolutely remote. It is not just blood transfusions that are a possible risk. British blood is no longer used to produce certain blood products such as plasma and anti-D injections because of the risk of british people getting CjD via mad cow disease. Blood products are obtained from America and Bavarian countries. Now it appears there has been an incident of 'mad cow disease' in America- don't know what will happen in the future.
Try not too worry about this information - I certainly have decided not to dwell on it.

Original poster
mieow · 16/03/2004 18:41

The thing is she didn't REALLLY need the tranfusion, she had low iron levels, and all they gave her was 2.5 mls of blood. I was very upset at the time as I told the doctor after I had her that we didn't want DD1 to recieve Blood, they wrote it on her notes and said it wasn't a problem. The same doctor was the one who ordered the blood tranfusion, but they didn't tell us.

OP posts:
mears · 16/03/2004 18:41

Nutcracker - they still take my blood despite the anti-D antibodies. There are other things they can get from it.

mears · 16/03/2004 18:42

Was DD1 preterm? Anaemia is a real problem for these babies. Blood transfusions are not given usually without a real clinical need.

nutcracker · 16/03/2004 18:45

Do they Mears, thats odd. I'm sure they said i couldn't give blood or be an organ donor. Maybe i got it wrong, but i don't think i did, as i remember thinking 'oh well i'm not much use to anyoine then' .

I'll have to try and find out .

Original poster
mieow · 16/03/2004 18:46

Yes she was born at 31 weeks. I just am annoyed that they overrode our decision and now this......

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mears · 16/03/2004 18:55

You are right that your consent should have been sought mieow, but if the reasons for it being thought to be necessary had been explained you probably would have agreed. Premature babies lose a lot of blood because of all the testing that needs to be done by doctors to ensure they have enough oxygen and nutrition. If it is not replaced by a transfusion then the anaemia makes the baby more prone to infection and increases their oxygen needs. For a preterm baby, 2.5ml blood can be vital.

My babies certainly did not have an option due to rhesus disease. It is the balance of risks which is the issue here really. The risk of CJD is negligible compared to the risk to health of not having a transfusion in some instances.

GeorginaA · 16/03/2004 18:56

mieow - I thought I'd read a couple of years ago that children under a certain age only received blood products from abroad? I'll see if I can dig up some info from the net to confirm or deny that...

GeorginaA · 16/03/2004 19:00

Here we go - released in Sept '02

(full document here )

"You may be aware of the announcement by the DoH in August that fresh frozen plasma will be obtained from the United States of America for new born babies and young children (born after 1st January 1996). We have received a number of queries regarding this announcement and will provide hospitals with further information as soon as possible."

mears · 16/03/2004 19:01

Meant to add that I was really upset by a Panorama programme one night that said anyone who had had a blood transfusion in 1990 was at risk of Hepatitis C because contaminated blood had been accidentally used. I was in tears and had to wait till the following day to phone the GP as DS3 had his transfusion that year. He was tested (unecessarily thought the GP) for HepC and he was fine (he was about 3yrs old I think. Consequently he was frightened of going to the doctors for years because of the trauma of having his blood taken for testing.

I do know how worried you feel but it is highly unlikely that anything will develop.
The trials of being a parent...

Original poster
mieow · 16/03/2004 19:02

I discovered that the blood tranfusion was ordered at 5pm , I phoned up at 11pm, wasn't told a BT was being ordered, wasn't even told she had been moved to a different bay, the BT was given at 1am. I went up at 10am and panicked when I saw she wasn't in her bay, in fact her incubator was n't even there, along with all her clothes and teddies, ran around crying thinking she had died, and then was told she was ok but had been moved to be near a O2 outlet. I was breast feeding her when the doc came along and said "OH was a naughty girl last night, she gave us all a scare, etc etc, she's had a blood tranfusion, shes fine now" And walked away......

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CountessDracula · 16/03/2004 19:07

great i had 10 litres

nutcracker · 16/03/2004 19:37

I have just emailed the national blood service to see if i can give blood or not. Am awaiting their reply.

kiwisbird · 16/03/2004 19:45

I had blood in New Zealand as a teenager but thats ok... But now I cannot give blood if I go back to NZ!!!

tamum · 17/03/2004 17:00

I was at a meeting last week when the head of the CJD surveillance unit talked. This advice is eminently sensible, but to put it in proportion, it is based on one case of someone who had CJD and gave blood lots of times. Lots of different people were given his blood products and one of them developed CJD 6 years later. There is no proven causative link, they could both happen to have got CJD separately (unlikely, but entirely possible). There is a risk, but it's a really, really tiny one. The number of cases is plummeting year on year, it's about a quarter last year of the number for the year before.

Please try not to worry misdee, I'm sure there's a much lower risk of your dd developing CJD than being run over by a bus, to give a trite example.

Original poster
mieow · 17/03/2004 18:03

LOL MISDEE is my sister, I'm Mieow!!!

OP posts:
tamum · 17/03/2004 18:17

Sorry, I don't know how I misread that! I did know you were sisters

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