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‘Is my baby a boy? Is it a girl?’ No one could tell me

by Steve BogganThe London Times
July 26th, 2005

The number of male babies born with reproductive disorders is rising rapidly, and some scientists blame a group of chemicals that are around us

As all mothers do, Sue Green remembers vividly the moment that her first baby was born, but not for the usual reasons. “The midwife was smiling, then her face fell,” recalls Sue. “ ‘Congratulations,’ she said. ‘It’s a . . . ’ And then there was silence.” 

The silence continued for some time. Doctors looked at the child. So did nurses. And, over the next few hours, medical students. But none of them said anything. With mounting anxiety, the exhausted mother asked what was wrong. “You’re not telling me something!” she remembers screaming. “Is it a boy or a girl?” But they couldn’t tell her.

Sue and her husband John had just become parents to a beautiful child that looked like a boy, but his sexual organs were terribly deformed.The baby had been born with a condition called hypospadias, a malformation whereby the opening in the penis through which urine is passed is in the wrong place. In mild cases it is slightly off centre, but in more severe cases it might be at the base of the penis or even beneath the scrotum.

In the case of their son, Mark, they couldn’t find an opening at all. Nor could they identify a penis; it was somehow fused to a tiny scrotum. In fact, it took four weeks of chromosome tests to establish that the baby was a boy.

This augured years of difficult times and painful surgery ahead. Taken as part of a bigger picture, cases such as Mark’s — corrected after six operations over three years — are raising the alarm among medical scientists across the industrialised world, because what happened to him is happening more often to newborn babies in families with no history of the condition. It is part of a growing incidence of genital deformities, poor fertility rates and an explosion in testicular cancers that, together, are screaming out that something is wrong.

As yet, no one can say for sure what causes the problems. However, there are suspicions about chemicals in the environment — compounds that have the potential to upset the delicate balance of hormones in the body. Prosaically called “endocrine disrupters”, they touch on every aspect of our lives. They are found in the plastics, carpets and fabrics all around you. Tiny amounts are found in your milk, vegetables and in some packaging surrounding your food. They are in your make-up, perfumes, face creams and the sun lotions that protect your skin. They are in the pesticides that allow your food to grow — and even in the coatings of slow-release medicines. In fact, there is nothing that you can do to avoid them.

In May, more than 120 scientists from around the world met in Prague and issued a declaration to Western governments giving warning that reproductive problems were increasing in developed nations, and calling for more research into what was causing them. 

The declaration made two points clear: first, that “there is serious concern about the high prevalence of reproductive disorders in European boys and young men”, and, secondly, that endocrine disrupters may be one of the factors responsible. Last month, scientists found the first evidence — which is hotly disputed — that they could be right.

When Mark Green was born in 1995, his mother had never heard of hypospadias; neither had many of the medical staff at Antrim Hospital in Northern Ireland where he was delivered. “They were obviously very concerned because they couldn’t find a hole through which Mark could pass water,” recalls Sue, 34, a care worker. “They rushed him to Royal Victoria Hospital for Sick Children in Belfast — still without telling me what was wrong — where a specialist found an opening in his scrotum. Eventually, they told my husband that Mark had hypospadias, but we couldn’t find any information about it anywhere.

“I was devastated and deeply worried. Everyone wants their baby to be perfect, but this was something that we’d never heard of. And more than anything, it was something that we felt we couldn’t talk about. Outside my immediate family, there was no one to share our worries.”

Over a period of three years, Mark underwent six operations to separate his penis from the scrotum, to construct a urinary tract and to enable him to urinate normally. He is now 10 and his parents are still waiting to find out whether his sexual organs will function properly in puberty. It is a source of enormous concern for them.

Even worse, until four years ago, Sue was wrongly blaming herself for his condition. She had been suffering from an illness of her own and had been taking medication to alleviate the symptoms.

“I thought that the medication had caused Mark’s problems,” she says. “I felt terribly guilty that that had affected him somehow. I thought that it was my fault. It wasn’t until we were referred to a geneticist that I was assured that wasn’t the case.”

By then, medical thinking was changing. In 1993, Professor Richard Sharpe, of the Medical Research Council’s Human Reproductive Sciences Unit, and Professor Niels Skakkebaek, of the Department of Growth and Reproduction at Copenhagen University Hospital, published a paper in The Lancet suggesting that high levels of oestrogen in the environment could be responsible for damaging semen and other reproductive problems.

There was ample evidence in the wild that exposure to oestrogen had demasculinised creatures, including fish and alligators in rivers that contained the female hormone. It seemed that the synthetic oestrogen used in the contraceptive pill had not been breaking down during sewage treatment and was passing into the environment.

There was evidence, too, that certain chemicals had the ability to affect the performance of hormones. These were endocrine disrupters and they were found in more than 40 groups of chemicals, ranging from pesticides to paints. One substance, tributyl tin (TBT), had been used to coat the hulls of ships to prevent barnacles from growing. During the Eighties scientists discovered that TBT had interfered with the reproductive systems of more than 100 species of fish, clams, shrimps, plankton and so on, devastating some aquatic populations.

So, could this be happening to people? Many experts believe that it could. Laboratory tests performed on pregnant rats and mice have found that exposure to endocrine disrupters called phthalates, used to soften plastics, resulted in offspring displaying the kind of reproductive problems that are now more prevalent in the human population.

Further insight came in 2001, when a team led by Professor Skakkebaek hypothesised that hypospadias was in fact part of a syndrome — which he called the testicular dysgenesis syndrome (TDS) — that encompassed several problems: poor semen quality, cryptorchidism (where a boy’s testes fail to descend during foetal development) and, in later life, a predisposition to testicular cancer — boys with cryptorchidism are up to eight times more likely to develop such cancers.

Their hypothesis, now widely accepted, was that something was interfering with the development of the foetus during a crucial, but brief, period in the womb.

“The evidence suggests that the conditions could be connected, and that they might be caused by environmental factors in some cases,” says Professor Skakkebaek. “I believe that the situation is much more serious than we would like to think. Many people point to social factors as being the main cause of low fertility rates — obesity, women waiting later in life to have children and so on.

“But we should also suspect that lifestyle and environmental factors, including endocrine disrupters in very small concentrations, could also play a role in the extremely low European fertility rates.”

Professor Skakkebaek and his team from Denmark are at the forefront of international research because symptoms of TDS are more prevalent in that country than anywhere else in Europe. He has found that almost 1 per cent of all young Danish men are treated for testicular cancer, 40 per cent have subnormal sperm counts and 4.5 per cent are born with some degree of hypospadias — 1 per cent with “severe” forms of the condition.

In the UK accurate figures are difficult to come by, not least because the conditions can be easily misdiagnosed. Also, according to the Office for National Statistics, there is currently no legal requirement for hospitals and doctors to report hypospadias or cryptorchidism. Official figures show no significant change — 458 cases of hypospadias in 2003 compared with 484 in 1995 — but, anecdotally, scientists, doctors and medical support groups have told The Times that they are dealing with many more cases of infertility, cryptorchidism and hypospadias than in the past. Whereas parents used to be told that the rate of hypospadias was about one in 350, doctors in some parts of the UK now estimate it to be about one in 150.

Professor Sharpe says: “Cryptorchidism and hypospadias are two of the most prevalent congenital malformations in newborn children, yet we don’t even have accurate figures that can tell us exactly how common they are because of variations in diagnosis and the current lack of requirement even to formally report them.

“All we know is that across Europe the conditions are on the increase, sperm counts may have dropped substantially and over the past 60 years the incidence of testicular cancer has increased by 600 per cent. Given that we now believe these are all connected, forming the testicular dysgenesis syndrome, there is quite clearly something affecting the hormonal development of foetuses in the womb.

“It is premature to say exactly what the cause is — it would be counterproductive to jump to conclusions. There are clearly some lifestyle factors, but the evidence is also slowly pointing towards endocrine disrupters.”

Professor Sharpe believes that something could be affecting the ability of testosterone, the male sex hormone, to perform its key roles in masculinising the developing male foetus.

Phthalates, the compounds that have been coming under the most scrutiny recently, are used in a huge number of plastic products and cosmetics. At the end of May, Shanna Swan, a professor in obstetrics and gynaecology at the University of Rochester School of Medicine and Dentistry in the United States, published research that she claims provides the first real evidence that certain phthalates in pregnant women have a direct impact on the development of boys in the womb.

In laboratory rats, exposure to phthalates was known to reduce the length of the perineum, or “anogenital distance” (AGD), in newborn males. Given that males have a longer AGD than females, this was evidence of interference. Professor Swan’s team measured the AGDs of baby boys while, separately, urine taken from their mothers during pregnancy was analysed for phthalates. The boys with the shortest AGDs had mothers with the highest levels of phthalates in their urine.

So is this definitive proof that phthalates are responsible? “No,” says Professor Swan. “This is just one piece of research that needs to be reproduced and examined by others. Until now, however, some people had been saying, ‘Well, the effects are only in animals.’ This is the first time that there is evidence of a possible effect in humans. There needs to be much more research, but I do think that the evidence is slowly pointing to the chemicals in our environment.”

The chemical industry rejects Professor Swan’s findings and methodology, pointing out that under EU testing regulations phthalates have been examined rigorously over the past decade and been given the all-clear.

Dr David Cadogan, of the European Council of Plasticisers and Intermediates, says: “In general, the phthalates that have been risk- assessed are not showing any risk to humans. There have been similar tests to Professor Swan’s that contradict her findings.”

Nevertheless, parents of children with hypospadias, adult sufferers and the surgeons who treat them remain suspicious. They would like to see more government money being spent on research, accurate statistic-gathering and lifelong help for victims.

The European Parliament is so concerned about the potential damaging effects of phthalates that on July 5 it voted to ban three types of the plasticisers from children’s toys.

Jane Clarke, a community paediatric nurse, runs the Hypospadias Support Group from her home in Warrington. She says: “I set up the group seven years ago to help parents; there was so much anxiety and very little information out there. But I’ve never been busier than I am now — I’m inundated, particularly with calls from people asking for advice about corrective surgery. There is a lot of confusion out there.”

Indeed there is. Aivar Bracka, a consultant genito-urethral plastic surgeon at Russells Hall Hospital in Dudley, is regarded as the country’s best at correcting hypospadias. Yet because there are no NHS rules on which type of surgeon — general paediatric, paediatric urologist, plastic surgeon — should operate, 30 per cent of all his work involves correcting the mistakes of others, what he describes as “salvage work ”.

For now, that is where this story ends; in mystery and confusion. And for the thousands of silent sufferers in the community, that isn’t good enough. One of them, William, 58, a hypospadias victim, sums up the frustration. “I was delivered by my grandfather, a doctor, and my own father was a doctor, but I was over 30 years old before I even heard the word hypospadias,” he says.

“I went through childhood in ignorance; the first I knew that there was something wrong was in the showers at school. Then I realised that I was different and the teasing began; it was a nightmare.

“I, like all hypospadias sufferers, avoided sexual relations until very late. I got no help, no advice and no information. When surgeons do get involved they are often the wrong surgeons — I had no corrective surgery.

“And no thought is given to the psychosexual aspect of the condition. This is a huge problem, an enormous secret wrapped in shame, a secret that thousands of people carry with them through life, never discussing it with anyone.”

Now, given that all the evidence suggests such problems are on the increase, perhaps this is a secret that should finally be shared.

Some names have been changed.

•  Hypospadias Support Group: www.hypospadias.co.uk

•  Concerned parents group: www.groups.yahoo.com/group/hypospadias

•  Phthalates Information Centre: www.phthalates.org

Hard to avoid

ENDOCRINE disrupters and toxic chemicals such as some phthalates, biphenyl A (BPA), brominated BPA and polycarbonated biphenyls (PCBs) are present in plastics, furnishings, cosmetics and some food and drink containers. They can be directly absorbed through the skin, or by drinking or eating products that have been contaminated through the food chain.

There is little that you can do to avoid them, although some experts recommend eating organic meat, fruit and vegetables and drinking only from glass bottles (although the chemicals industry argues that plastic bottles are perfectly safe).

Some also advise against letting children wear T-shirts bearing plastic pictures or logos. Greenpeace lists household products that it believes are safer than others; visit www.greenpeace.org.uk.