# Test Tube Time Bomb



## heavenlyharry (Dec 18, 2005)

Quite an interesting article. More interesting are some of the comments underneath, especially Sarahs "apparently if you can't have children you should get over it and buy a dog"!!!!

http://www.dailymail.co.uk/femail/article-1175209/The-test-tube-timebomb-It-brings-gift-life--scientists-warn-IVF-babies-likely-birth-defects.html

/links


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## **ElaineW** (Mar 1, 2009)

I know Yvonne is an FF'er --gorgeous pics of your twinnies and well done for the article xx


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## levin (Jan 9, 2006)

I must admit that articles like this always make me very worried and make me feel very guilty about how my bubs were conceived. I feel that we weren't told anything about any potential health risks to the baby when we went through treatment and now i find myself watching their every move and fearing that something is going to be wrong with them because we went through ICSI - that said i was so desperate for a baby i would have still gone ahead with treatment even if i had been warned - makes me feel very selfish though when i read things like this.
Yvonne -Your babies are absolutely gorgeous.

Love Leanne x


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## Essex Girl (Apr 3, 2005)

Leanne

We have enough to deal with without guilt trips from the Daily Mail.  

Just think about the number of mums who post on this board, and how many of them haven't got children with birth defects when they used IVF or ICSI.  Conversely, I know quite a lot of special needs children now, and as far as I know, mine is the only one conceived through IVF.

I'm sure your two are fine - if there were serious problems, they would have been picked up ages ago.

EG x

PS I have replied on their site, but last time I did, they didn't include my comment, so I may have wasted my time again....


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## Jane D (Apr 16, 2007)

Hi

I note with interest there were more pro IVF comments than stupid ones this time.  Essex Girl - I usually send a comment to these articles, but have never had one published.  My name must be on a black list somewhere.

Jane


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## martina79 (Jul 27, 2008)

Hi girls
i just think all of us with IF issues should stop reading the Mail! its so anti-IVF well actually its anti-women i think - it doesn't matter what you do according to the Mail its always wrong!! every time they do an article like this which is basically scaremongering, complete idiots always rant about why ivf is wrong being totally blase about the pain and hurt we suffer & every time i read it i get really really angry & DH always tells me not too read it in the 1st place! i know he's right but i jsut can't hlep myself....


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## Jumanji (Feb 13, 2008)

just another very good example of why I wouldn't wipe my ar$e with the Daily Mail.


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## yfinlayson (Dec 15, 2004)

Hi Girls,

Yvonne here! I had missed the article but someone from INUK told me about it. Most of its correct, but for the record my wee girl didn't need calipers, just physio. The media always use creative licence!  

To be fair to the mail we featured in their paper a few months back (that's how they got us as contacts) and that story was _very_ pro-IVF, I guess they have just shown both sides of the fence.

I'm in two camps about the story. I am not in the scaremongering camp by any means, but I spoke to an embryologist the other day about this and defects _are_ higher than what is reported - but for ICSI,not IVF, as you would likely expect. There are also issues in reporting - my twins are from an overseas clinic and so don't even feature on the UK stats. Some patients 'disappear' from their clinics system after they have conceived, so they are not tracked either.

Here is a fact - if you were to ask a urologist what % of his hypospadias patients are ICSI (and that's only the ones that tell him as there is no obligation to do so) the stats are much higher than the 3% that's reported.

For us the numbers were irrelevant, we would still have gone ahead whether it was 3% or 30%. BUT - had we known what to look for a boost of testosterone at 14 weeks gestation _might_ have helped Lewis genital development. We were unaware of this, what to look for etc. A boost of testosterone costs a few quid, Lewis repeated endocrinology, operations etc will cost the NHS much more. (Now that's another road I don't want to go down......) 

I guess what I'm saying is if the numbers are much higher, then it might lead to more research, which could hopefully push the numbers down.

Yvonne x


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## Essex Girl (Apr 3, 2005)

Well done, Yvonne, for going public.  The more people talk openly about IVF, the more the general public will hopefully come to accept it as normal.  (Says I, hypocritically, who thought about contributing but decided I did not want to air my personal details in public after all....)

It does seem a pity that your urologist wasn't quoted in the article.  It is rather disheartening to think that we cannot actually get reliable information from the general media - 'never let the facts get in the way of a good story' - and accurate information has to be sought out on the internet on sites like this one.

I don't know a great deal about hypospadis, but my nephew had it and he was conceived the normal way.  I am concerned that if more is said about the link between IVF and congenital defects, people will tend to assume that the one automatically goes with the other, but defects can emerge at any time and against the general trend, and that is just part of the lottery of life.

Wishing you and your 2 all the best
EG x


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## gerbera (Aug 4, 2008)

i had to stop myself writing something very rude on there! i am a paediatric nurse (19yrs) and have looked after a lot of boys having hypospadius repair, none of which were ivf babies. most ivf problems i have encountered are from multiple birth and prem birth. but i would have more than two embies put in given the choice!


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## yfinlayson (Dec 15, 2004)

Hi Gerbera, 

Sorry if I have upset you.  I guess the emerging research will prove this one way or another and we are taking part in that.  Lewis has a severe hypospadias, with bifid scrotum and total penile chordee - there were only 5 of this severity last year, and we have agreed to the filming of his ops so they can be used to teach medical students.  We had to have genetic tests when he was born to check he was male, which thankfully came back Ok. One of the first questions we were asked was if he was an ICSI baby - now that tells me there might be something we 'the general ICSI community' are not aware of.  I have been told that there does seem to be a pattern in these cases hence why the research is being conducted.  

Hypospadias does occur 'naturally' in 1 in every 300 boys, normally its mild.  In these severe cases there does 'appear' to be an ICSI link, the incidence is as yet unknown.  We were just unlucky.

ICSI itself is relatively new (1992), and as you're not obliged to tell any nurse or doctor if your child is ICSI or IVF the docs don't know how many of the hypospadias patients they see are down to ICSI or IVF - that's half the problem - hence why there are research programmes underway.

For the majority of IVF patients (including us) the desire to have a family was more powerful than the research stats. Even if we were told the incidence was as high as 30% or 50% we would still likely have gone ahead.  All I would like to see is accurate stats presented and we can make choices from there.  

It doesn't help that I had a multiple birth as you say.  I was given stats (from my US clinic) that 20% of twins will have a congenital abnormality, 50% of triplets and 70% of quads - I have never been able to find any stats anywhere in the UK. (Probably because embryos transferred are limited in number). Again with hindsight we were foolhardy (and desperate) perhaps - I had 4 embryos transferred.  We were lucky we only ended up with twins - but I did have pre-eclampsia, they were slightly prem, and Ava had apnea of prematurity in addition to her talipes due to her intra -uterine growth restriction - attributed to the multiple birth perhaps?  

At the end of the day I wouldn't have done anything differently, and I do hope the story doesn't put anyone off. This is only one side of the coin.

Yvonne x


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## Jane D (Apr 16, 2007)

many thanks to yFinlayson and everyone else for their comments.  I have been very worried recently, as I am 15 weeks pregnant with an ICSI singleton and have been reading about birth defects. We didnt  have male factor problems, we had ICSI as on EC day, my husbands sperm sample was one third of his usual samples, this was possibly due to him having had severe flu 6 weeks earlier.  I asked my clinic about birth defects and ICSI and she said that during her numerous years in fertility, there had been no problems with any of her ICSI babies, but said that there could be issues if the baby was a boy and he may have lower sperm count later in life.  For me, this is the same as my own position.  I had premature ovarian failure, 12 months after having dd by natural conception.  For all I know I may have passed on POF.  The main thing is I can warn my daughter about my experience and depending on what I have warn my second child too.  Incidentally, does anyone know if issues with genital area can be picked up on the 20 week scan? Is there enough detail on a 20 week scan?

Thanks again

Jane
x


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## gerbera (Aug 4, 2008)

yfinlayson, 
uu didnt upset me! ur son does have a severe case   and i am sorry to have come across in the way i seem to have! xxx
but the surgery is pretty amazing these days and even more options available than when i worked in a major centre and some were left with nothing.
i agree that it def needs researching but it still wouldnt put me off. i am more in favour of the usa system but then i would have selective embryo treatment if i was carrying any more than twins. but many people find that difficult.
obviously people arent obliged to disclose how their child was conceived but most parents do tell u particulary with long stay ops such as hypospadius repairs/treatment. 
i wish u and ur family (especially ur son) lots of luck, are u finding ur hubby is finding it more difficult than u due to the nature of the condition?
xxxxx


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## gerbera (Aug 4, 2008)

nb
it was the public comments i was annoyed about!!!


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## yfinlayson (Dec 15, 2004)

Hi gerbera, 

Don't you just hate e-mail at times....I thought it was me you who had upset you!!  

My DH was actually quite practical about Lewis' condition - I was the one panicking.  When the twins were born we had an army of people in the room poking and prodding and generally misdiagnosing everything - at one point they said my daughter was deaf (turned out once they cleaned her ear it was fine!)    We were there for four days and people kept coming and looking in Lewis nappy....now this is going to sound stupid, but I hadn't a clue what they were doing and I was recovering from a section and so I wasn't exactly 100%.  Anyway, in came a chinese doc who asked me if we had registered their births yet, and told us not to as he thought there might be a problem. (This was during a time when my DH had gone home).  I could have wept, not for me, but for the life I was imagining for Lewis.  They phoned a consultant to come in who felt two palpable testes and apparently he was fine - but the genetics tests were run just to double check. I was bricking it. He now has a flap of skin and is awaiting reconstruction.  I did my research (was not a wise idea) and years ago (30 odd) the suicide rate for patients as severe as him was 30% as they weren't great at making it look normal and function properly.  Now, as you say, its amazing, they believe he will look absolutely normal once they are finished, and everything should work normally.

Re selective reduction - my clinic spoke to me in detail on this due to the number of embies I had put back. They gave us the number of a doc in new york - a situation none of us want to be in, but you need to weigh up the risks vs viability.  I'm so glad we didn't have to make that decision. - my DH was adamant we were only having two max.

Jane - please try not to worry.  The risk (and its not high) is magnified with multiples.  Lewis severe hypospadias might have been visible at our 20 week scan apparently - the issue however is the vast majority of sonographers don't know what to look for.  You would be very unlikely to have a severe hypospadias.  Please also don't worry about the passing on of POF.  Eggs, and immature egg cells, can be frozen now quite successfully.  I think its terrible that we, as infertility patients, have a predisposition to worry about this - the bulk of the population are blissfully unaware and take fertility for granted.  Technology is advancing all the time.  Please try to relax and enjoy your pregnancy.

Yvonne x


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## gerbera (Aug 4, 2008)

u sound like a wonderful person! ur kids would have a positive outlook on life no matter what wiv a mum like u   xxxxxx


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## Betty M (Dec 6, 2005)

Hi Yvonne

Good on you for getting your story out there. I hope

I always wondered why clinics were so reticent in telling us about the small additional risks of congenital defects. They have been known for some time. I think most of us would take that risk even with all the info. I found a useful Royal College of Obs & Gynae paper some time ago http://www.rcog.org.uk/womens-health/clinical-guidance/perinatal-risks-associated-ivf which mentions all the risks associated with IVF/ICSI. The biggest risk of all is twin pregnancy and most of us are prepared to take that risk.

Hope everything goes well with the treatment yours are having.

Betty


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## fluffyhelen9999 (May 13, 2005)

I know there is a higher risk, but I honestly don't think in the grand scale of things it's much different to a naturally conceived child.
I took my son to a paeditrician once and he went through a standard questionnaire thing he had, about his development etc...  when I mentioned he was a ICSI baby, he didn't have a clue what ICSI was.  He was fully trained doctorn with years of experience.  If ICSI babies really did have a hugely higher chance of abnormalities, Im sure I wouldn't have had to explain what ICSI was to him.  Unless he really was a little    
Multiples, unfortunately are a higher risk pregnancy etc    but then Ive had more than 1 embie put back on a few occasions, so definately a risk I took too.


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