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Eeyore

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Saturday, March 21st 2009, 8:35am

** HFEA TO WARN OF IVF BIRTH DEFECT RISKS **



The news is in the Guardian and most National newspapers today.

As soon as the HFEA post their official statement, I will include it


IVF watchdog to warn of birth defect risks - The Guardian

Couples seeking IVF treatment are to be warned for the first time that their children have a higher risk of suffering birth defects, disability and life-threatening conditions.

The alert by the Human Fertilisation and Embryology Authority (HFEA), the government's watchdog on fertility issues, follows a US study indicating test-tube babies are at a 30% greater risk of suffering from conditions such as cleft palates and defects with heart valves and the digestive system than children conceived naturally.

The research, carried out by scientists from the US Centres for Disease Control and Prevention in Atlanta, and based on 13,500 births and a further 5,000 control cases, also found IVF babies has an increased chance of rare genetic disorders such as Angelman syndrome and Beckwith-Wiedemann syndrome.

The warning comes as the Human Fertilisation and Embryology Act comes into law, and is likely to shape the decisions of the estimated one in six British couples who are infertile.

The HFEA says more than 12,000 babies were born in 2006 as a result of IVF.

An HFEA spokesman said: "As with any medical procedure, it is important that patients understand what the treatment involves and what the risks may be.

"With new legislation being introduced later this year, HFEA is also revising and updating the patient information it provides."

In its warning, the HFEA will say the majority of babies born by IVF are healthy and that more research is needed on the issue. This is the first time the authority has made an official warning over the risks of IVF.

IVF babies in health alert: IVF children 30 per cent more likely to have defects, warns watchdog

Couples having IVF treatment are to be warned for the first time that their children have a higher risk of genetic flaws and health problems.

Official guidance will make clear that test-tube babies could be up to 30 per cent more likely to suffer from certain birth defects.

The alert has been ordered by the Human Fertilisation and Embryology Authority, the Government's watchdog on fertility issues.

It means that the one in six British couples estimated to be infertile will have to balance their desire for a child against concerns that IVF methods could lead to life-threatening defects or long-term disabilities.

A number of studies have already raised concerns over the growing use of the procedure, which accounts for more than 10,000 births in Britain every year.

Research published online last month in the Human Reproduction journal found that IVF babies suffer from higher rates of birth defects than those conceived naturally.

The scientists from the U.S. Centres for Disease Control and Prevention in Atlanta looked at more than 13,500 births and a further 5,000 control cases using data from the National Birth Defects Prevention Study

They found that IVF babies suffer from a range of conditions, including heart valve defects, cleft lip and palate, and digestive system abnormalities due to the bowel or oesophagus failing to form properly.

In addition, IVF babies have a small but increased risk of rare genetic disorders including Angelman Syndrome, which leads to delays in development, and Beckwith-Wiedemann Syndrome, which can lead to a hole in the abdomen and learning difficulties.

HFEA experts believe parents should be told of the concerns associated with IVF - although they emphasised that not all the risks are fully understood and more research is needed.

One theory is that the fertility drugs which stimulate egg production can lead to poorer quality eggs, which nature would usually weed out.

Another is that older women - whose eggs are of a lower quality - are more likely to turn to IVF to conceive.

Until now, official HFEA guidance on the safety of IVF has expressed only limited concerns about babies born by ICSI - where a single sperm is injected into an egg to create an embryo.

The method is feared to lead to a doubling of birth defects including genital and urological abnormalities, kidney problems and deformities of the stomach and intestines.

But now the watchdog is to warn generally of the risks associated with all types of the procedure.

Patients will be able to access the HFEA's advice on its website from next month, while IVF clinics will have to tell couples of the risks from October.

The HFEA will also make clear that the majority of babies born by IVF are healthy.

Last night, IVF specialist Richard Kennedy, of the British Fertility Society, said: 'We have known for some time that there is a slightly increased risk of abnormalities for all IVF treatments, not just ICSI.

'It is only right that patients should be told about this and it is a good thing that the HFEA is updating its guidance.

'What we need to remember is that the overall risks of an abnormality occurring is increased with IVF but it is still a small risk. Nevertheless, patients still need to be aware.'

Around 2.5 per cent of babies in the general population are born with some form of birth defect, while in IVF, this may rise to around 3.5 per cent, he added.

Josephine Quintavalle, of the campaign group Comment on Reproductive Ethics, said: 'IVF should never be the first port of call for someone trying to conceive and we need a lot more money to go into research to help restore fertility for natural conception.

'IVF is often used when couples are "sub-fertile", meaning they take longer to conceive, or by single women wishing to conceive using donor sperm. Patients need to consider the risks.'

An HFEA spokesman said: 'Following the publication of a U.S. study into birth defects, HFEA's Scientific and Clinical Advances Committee reviewed our guidance and advice about the risks.

'As with any medical procedure, it is important patients understand what the treatment involves and what the risks may be.

'Our code of practice says that clinicians must tell patients about the possible side effects and risks of treatment, including any risks for the child.

'Anyone who has concerns about their treatment should discuss this with their doctor.'

New guidance on IVF defects risk - BBC NEWS

Couples seeking IVF are to be warned children born as a result of the fertility treatment may face a higher risk of birth defects.

Guidance from the Human Fertilisation and Embryology Authority (HFEA) is to be updated in the light of US research.

Scientists in Atlanta found IVF babies could be up to 30% more likely to suffer from certain health problems and genetic flaws.

More than 12,000 babies were born in the UK in 2006 as a result of IVF.

Patients will be able to access the HFEA's advice on potential risks on its website from next month.

The government's fertility watchdog will also make clear the majority of babies born by IVF are healthy and that more research is needed on the birth defect issues.

The study from the Centers for Disease Control and Prevention found IVF babies suffered from higher rates of conditions such as heart valve defects, cleft lip and palate, and digestive system abnormalities.

An HFEA spokesman said it routinely reviewed its guidance.

"Following the publication of a US study into birth defects, HFEA's scientific and clinical advances committee reviewed our guidance and advice about the risks of treatment," he said.

"As with any medical procedure, it is important that patients understand what the treatment involves and what the risks may be.

"Our code of practice says clinicians must tell patients about the possible side effects and risks of treatment, including any risks for the child."

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Saturday, March 21st 2009, 9:39am

Thank you for posting this Eeyore, interesting read x

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Saturday, March 21st 2009, 9:49am

Around 2.5 per cent of babies in the general population are born with some form of birth defect, while in IVF, this may rise to around 3.5 per cent

So i think it's important to remember that the risk is still very small :smile:

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Saturday, March 21st 2009, 9:52am

sorry but this makes me really cross. X(if you read the article they are basically saying the risk goes from 2.5 per cent for natural conceptons to 3.5 per cent.

Hardly a massive rise or in total a massive risk. in addition the article says that the HFEA says that there need to be more studies.

I think its more likely that some of this is due to the fact that the average woman undergoing IVF is older than the average woman concieving naturally.

I would be interested to see research that compared birth defects in natural of woman 30-40 and IVF woman aged 30-40. I wonder if there would be such a difference.

I am not saying that there is no risk, but i think it interesting that this announcement coincides with publicity about NICE saying people should get 3 goes and the knock on cost.

If people are scared to have IVF then the costs to the NHS would also drop. Scaremongering and propaganda IMO.

This post has been edited 1 times, last edit by "BraveGirl" (Mar 21st 2009, 9:53am)


Eeyore

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Saturday, March 21st 2009, 10:21am

I don't think that the HFEA are scaremongering, a rise from 2.5% to 3.5% is a 30% higher risk of birth defects and as the governing body they feel that it is essential that this information is passed to couples going through IVF.

Their study is based on 13,500 births and a further 5,000 control cases, and they feel that the stats are significant enough to be passed on.

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Saturday, March 21st 2009, 10:23am

interesting read, gives us all something else to worry about then :rolleyes:!!

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Saturday, March 21st 2009, 10:47am

heard this on news today, well, yea, thanks for posting it, agree - something else to worry now... :rolleyes:

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Saturday, March 21st 2009, 12:17pm

i think that a rise from 2.5% to 3.5 is something to think about however if the HFEA were that concerned then why take a month to update the website

yes it is a worry but i think we all go into this with our eyes wide open, we all read the side effects of the drugs etc etc

as tech moves forward so will the tests and data and that is all this is. IVF is most of the time giving a hard time in the press as its more interesting than a story about an infertile couple having ivf, a prefect pregnancy and then prefect twin babies.

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Saturday, March 21st 2009, 12:27pm

The real question is - is this going to stop any of us? Personally this article has not put me off, but I guess it is important that we are informed, maybe this would be enough to change some couples' minds but I reckon the numbers will be few.....................

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Saturday, March 21st 2009, 4:59pm

Quoted

Originally posted by Gracie
The real question is - is this going to stop any of us?


I dont think it will stop me - no :D BUT - the only thing i am concerned with, is ICSI ... they say: (and i didnt know this until today)

Until now, official HFEA guidance on the safety of IVF has expressed only limited concerns about babies born by ICSI - where a single sperm is injected into an egg to create an embryo.

The method is feared to lead to a doubling of birth defects including genital and urological abnormalities, kidney problems and deformities of the stomach and intestines.


My DH was born with urological/kidney and intestine problems, and still suffers to this day ... my consultant has told us that ICSI is the next step for us, as last time we only had 5 eggs fertalized out of 15 ... by the sounds of it, we are DEFF at a higher risk at this happening ... why on earth is he suggesting this to us???? Im really confused now ?( i think i would rather stick to IVF .... ?(

This post has been edited 1 times, last edit by "Welshbird" (Mar 21st 2009, 5:01pm)


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Sunday, March 22nd 2009, 7:23am

Oh my God, another thing to worry about. They don't sound too sure though as they say more research is needed ?(

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Tuesday, March 24th 2009, 10:21pm

This warning angers me slightly

I already have a high chance of having a disabled child, Have a genetic condition which have been told has a 50% of being passed down.

What bothers me about this "warning" is the feeling that a child with a disability is a "problem" I have been disabled all my life, Didnt walk til I was 8 and got the usual stares, pointing, whispering but I was loved and I have had a great life.

A disabled child is a child regardless and alhough may not have as easy a life as "normal" people its no less of a life.

I have lots more to say but this is not the thread to discuss it on.

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Wednesday, March 25th 2009, 12:31am

Good for you Pammy, I agree. However when it comes to serious heart ,or other painful conditions it is food for thought.
Again though I dont think it will stop most people.
When I started this I wanted everthing to be as natural as possible..having tried it all ... I appeared to throw alot of my ideals and concerns out of the window or at least to the back of my head.
I think that it has always been a worry for some, that eventually we'd find that using eggs and/ or sperm of a lesser quality would = children that may have small problems as nature wouldn't normally have let these cells become a child.
However, I think that nature has many filters and I think that the ones who survive reguardless of method of conception are here for a reason and it is meant to be. No child should be denied the gift of life and parents who want them so much if the risks are small. They just need to find a way to refine their ivf techniques and their grading of embryos etc to lessen this risk.
Try not to worry girls.x

This post has been edited 1 times, last edit by "astro" (Mar 25th 2009, 12:32am)


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Wednesday, March 25th 2009, 6:14pm

Well said Pammy!!!

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Wednesday, April 15th 2009, 9:25pm

Yes, this is interesting reading. We are likely to go straight to ICSI because of our circumstances (male factor) and they did talk about this with us. We were told that DH might well pass on his infertility - obviously mother nature would normally screen this out, but ICSI doesn't let her. So when the media talk about birth defects, they have trained us all to think of physical or learning disabilities, which scares a lot of people, when really the figures are skewed by the kind of 'abnormality' that DH might pass on.

Welshbird - don't let the spin doctors put you off - listen to the real doctors and good luck!

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Wednesday, April 15th 2009, 10:46pm

Quoted

Originally posted by ktf1


Welshbird - don't let the spin doctors put you off - listen to the real doctors and good luck!


Hiya!

Its not that im letting them put me off ... i understand that they have to account for those satistics ... im more concerned because the fact my DH was already born with these 'abnormalitys' so in which case - if ICSI can pass on infertility (which my DH doesnt have) then can it pass on the birth defects he was born with? I know for a fact that if there was any chance then he would not agree to ICSI ... he wouldnt put his child thru the numerous operations and the stigma that he went thru.... I do try to put it to the back of my mind, but when they come out with satistics like this - then of course, i do worry! Safice to say - i havent told DH about this thread ..... but, think i might have to ...

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Saturday, April 18th 2009, 6:49pm

At the Patient Information Evening in the Liverpool Womens Hospital, this Thursday (16th April) The Clinical Director, Charles Kingsland at completely de-bunked that this was as a direct result of IVF/ICSI, he even asked who had read the article in The Mail and if we had any idea why this was the case, (yes its true that its higher)

He said that it was purely down to age. The average age a women seeking IVF/ICSI is 35, which is much older than the average age for all pregnancies, and as we all know the older we are the higher the risks involved.

So I hope this helps to re-assure people


Andie

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Saturday, April 25th 2009, 6:44pm

Hi this is very interesting. I am a little worried as our clinic seem to have been very quick to recommend we do IVF/ICSI. They seemed a little blaze about it to be honest.
I am 31. DH azoospermic and his bro is kindly being our donor. His sperm count is between 35 - 60 million per ml.
We wanted to have IUI done, but she said 'I would just have IVF/ICSI if I were you. It's got a much higher chance of success (which is true), and you will probably end up spending less money than maybe 3 or 4 cycles of IUI which is what it might take to get pregnant.'
My concerns are more about the risks involved than the money because it seems to me the cost will probably work out around the same anyway. Or we could be really lucky and it work first time with IUI! Then we'll have saved a lot of money and a lot of risks!
We need to make a decision. Any advice?
Thanks :)

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Saturday, April 25th 2009, 10:09pm

Hi Lindsay ...

Im quite shocked ur clinic opted straghit to IVF/ICSI - especially as your only 31 and have a donor that has a great sperm count. Is there any other reason u are having treatment?? If not then i cant see a problem with IUI?

I know IUI isnt as sussesful for some patients, but for others it is. I know off hand 2 friends at the age of 38 and 39 who had IUI and it worked first time, but on the other hand i have another friends who has done IUI 3 times but had no sucess, but also had no sucess with IVF either!

I would seriously think about having IUI if all your bloods are ok (IE: AMH or FSH) i cant see this to be a problem ... i do understand about the money, say u take 3 go's at IUI to get pg (the same u say as for 1 x IVF) u could also have 1 x IVF and have no sucess ... so then ove on to IVF number 2, or maybe 3 which would cost u a lot more!!

Its your call, and also your clinic's - i do think that they dismissed your concerns, and i think u should go back there and ask them why not IUI to start u off? Also - im sure IUI is free on the NHS (ok there is a waiting list) but its something u might want to think about.

Can i ask also ... u might want to slap me after this .... if your DH's brother has offered to donate his sperm, and there is totally nothing wrong at your end, why are u seeking the clinics help? Could u not DIY with a good ole turkey baster (so to speak!) I dont understand why u need a clinic??

Or maybe im just thick (that wudnt surprise me) i wud deff go back and at least demand IUI if this is waht u really want ...

This post has been edited 1 times, last edit by "Welshbird" (Apr 25th 2009, 10:10pm)


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Thursday, April 30th 2009, 5:57pm

Hiya Becky

Thanks for your reply.

Well here's the thing. We have been trying DIY. We've tried it six times now but nothing. We haven't actually told the clinic this because they turn a blind eye to it anyway. I've had my blood tests and all is fine with me. To be honest I don't really understand why I haven't gotten pregnant yet. But I still think the next step should be IUI not IVF, don't you?

Confused :(

xxx

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Thursday, April 30th 2009, 6:01pm

Hey Hun,

My opinion is 'Yes' i do think that IUI should be next step! Im wondering why the clinic have opted to go straghit to IVF ... IUI is a lot cheaper than IVF, maybe this is their reason, i shouldnt say it cos maybe im wrong!

Have u had a consultaion with a different clinic to see what they think? Im sure IUI is free on the NHS hun ... you should deff look into it, i would! Get all the details u can and go back armed with all your questions as to why they wont do it for you.

Im quite shocked at that to be honest!

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Saturday, May 2nd 2009, 10:32am

Hiya

Thanks for your advice.

Yes I was quite shocked as well. I have been thinking of getting a second opinion from another clinic actually, i think that's a good idea.

And yes, like you say I am going to go in next time armed with a load of questions. I think she just caught me off guard the last time and I didn't know what to think. She just seemed so blaze about it. Like I would be wasting my time with IUI. Strange huh? I did also cynically think it was because IUI is so much cheaper. Who knows.

I did think about the NHS too but worried that the service would not be as good as with a private clinic and that it may have an effect on the chance of success. I could be wrong but I would hate to go on the waiting list at the nhs only to wish I'd gone private in the first place. I know its a lot of money, but it will hopefully be worth it.

I see you are going for IVF/ICSI soon. I wish you all the luck in the world!


xxx.

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Tuesday, September 8th 2009, 2:20pm

Hi Lindsay

Just saw your post, i was NHS funded and the nhs funded me at a private clinic called CARE nottingham as the nhs dont do ivf or icsi in my area. I could of also chosen Nurture they are a private clinic in a nhs hosp if that makes sense

All the bext xxx




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