A new lease of life

"She's - oh, how can I put it? - she's just everything." Lewis Kingston laughs as he holds his seven-week-old daughter, Jessica, in his lap. By nature a man of few words, he is just as inarticulate as most first-time dads about the new arrival that has turned his life upside down. But 36-year-old Lewis, from Enfield in north London, isn't your average dad. Twenty years ago he was involved in a car crash that left him with a spinal-cord injury and unable to work. He uses a wheelchair, has very little feeling down the left side of his body and only limited movement in his right leg. The sting in the tail of spinal-cord injury for men is that, as well as paralysing swathes of their bodies, it also makes it very difficult for them to father children.

Lewis and Jessica, however, are the first success story to emerge from a pioneering fertility programme that has been running for two years at the Spinal Research Centre at the Royal National Orthopaedic Hospital near the Kingstons' home. With funding from the charity Aspire, it is helping men with spinal-cord injuries to father children using low-tech, non-invasive techniques. Up until now, their only option has been recourse to complex and expensive IVF, which has a low success rate.

"When I had my accident," Lewis recalls, "I was young and kids were the last thing on my mind back then. But then I got together with my partner, Tracy," - the two had been friends since they were 12 - "and we started talking about having a family. I knew it would be very hard. So I went back to the hospital and they referred me to this project. I was one of the lucky ones. And now, with Jessica, it has changed my life."

Until 50 years ago, spinal-cord injury was considered a death sentence, but medical advances mean that, today, survival is no longer an issue. The emphasis has shifted firmly onto quality of life. For men coming round in a spinal unit - typically after a traffic, sporting or workplace accident that has damaged the central nervous system, contained in the spinal cord - there are two unpalatable facts with which doctors have to confront them. One, they will never walk again. And two, they will never be able to father a child.

"When you bear in mind," says Aspire's chief executive, Brian Carlin, "that about 60 per cent of the 1,000 or so new cases of spinal-cord injury in this country each year are men, and that most of them are young men between the ages of 15 and 35, it is a crushing blow. They've lost so much already, but to be deprived of what most of them have previously regarded as their natural right to be a parent is like being penalised several times over. It is as if their future is also being taken away."

Other charities - notably organisations linked with the Superman actor, Christopher Reeve, who suffered the most severe form of spinal-cord injury possible - are funding work on reconnecting the severed spinal cord, which it is hoped will one day allow patients to walk again. Aspire is involved in this area - through the professorial chair in disability and technology that it endows in conjunction with the Royal National Orthopaedic Hospital and University College, London - but with its practical, pragmatic ethos, the charity has also chosen to direct resources to tackling the question of fertility.

"In my experience," says Professor Mike Craggs, the director of the project, "the thing that men with spinal-cord injury think least about is walking again. When they come to us, it is with much more immediate issues. At first, they want to regain control of their bladder and bowel functions. Then they tend to worry about spasticity in their limbs. And once these are dealt with, they feel able to resume or start up relationships, and then it is sexual dysfunction and having children that concerns them." Lewis, he says, is typical of many of the patients he sees.

Spinal-cord injury affects each individual differently because, in many people, most damage to the mass of wires that carry the nerve signals from the brain to the limbs is incomplete. So some feelings will still get through, but they will vary in each case. Lewis has feelings on one side of his body, but with others there will be no movement below the waist, or limited feeling all over the body. In the worst cases, like Reeve's, even breathing has to be artificially stimulated. On the whole, however, most men will struggle to get and maintain an erection and ejaculate. There are various drugs - including Viagra - that can be taken or injected to help with erections and so allow for a fulfilling sex life.

When that sexual function then leads to dreams of being a father, the big issue for men with spinal-cord injury is the quality of their sperm. In the first two weeks after their accident, this drops off dramatically for reasons that are not altogether clear. Some think it is because of changes in the seminal fluid in which sperm swim. One aim of the Aspire programme is to cast new light on this area.

However, the programme's main goal is to test the thesis that frequent ejaculation, facilitated by giving patients easy-to-use vibrators to take home, will so improve the quality of sperm that natural conception will be possible. In basic terms, the more you do it, the better your chances. Of the 30 men, aged between their early twenties and early fifties, who are taking part in the programme, half use a vibrator at least once a week over a three-month period, and the other half only once at the beginning and once at the end. Their sperm counts are then compared.

"If you look at Lewis's case," says Professor Craggs, "it has been almost 20 years since his injury, but we believe we have still been able to improve sperm quality sufficiently so he can be a father. It potentially offers great hope to men who suffered their injuries years ago and have written off their chances of being a dad."

If it can prove its thesis, this programme holds out the prospect that men can become fathers in a fashion most able-bodied males take for granted - at home and without involving doctors or invasive techniques. Some of the men on the programme are able to penetrate their partner as a result of using the vibrator. Others can use a simple syringe to transfer the sperm.

At present, outside the Aspire project, the only other hope for would-be dads is IVF, which often involves stimulating ejaculation by inserting a probe up the rectum under clinical conditions. It is a technique pioneered with animal husbandry. Then, technicians attempt to fertilise an egg in the laboratory with the most viable of the sperm produced. The NHS has so far refused to fund such a process, on the grounds that it has a very low success rate, and so it has only been open to those men with spinal-cord injuries who are able to pay sums of about £3,000 a try.

Another obvious alternative would be - as is the case with young men diagnosed with cancer - to take some sperm as early as possible and freeze it, thus sidestepping that initial plummeting sperm count. At present, most doctors refuse to do this so soon after a man arrives at a spinal unit on ethical grounds. "Given the psychological problems in the immediate aftermath of a spinal-cord injury, we tend to the view that this would not be the appropriate time to recover sperm," says Professor Craggs. "In fact, it is positively discouraged, and even if policy changed that would not help those with an existing injury."

For Aspire, the biggest breakthrough that Jessica Kingston represents is the chance to banish forever from spinal units the words "never be a dad". "In all our other activities, we promote the idea - or ideal - that there should be no barriers between able-bodied and disabled people," says Carlin, "and that, with assistance, people with spinal-cord injuries can lead fulfilled and independent lives like everyone else. If Lewis Kingston's case shows that natural conception is possible, then the whole area of fertility could cease to be an issue."

The professor is a little more cautious. There are, he points out, other issues still to be tackled that are social rather than medical. "There remains a stigma attached to parenthood for men with disabilities. Often, spinal-injury patients are not given the encouragement to contemplate being a father because they are told they may not be able to manage a child. Social attitudes are beginning to change, but only slowly." Recent studies by the support group the Disabled Parents Network have, for example, shown that children whose mother or father has a disability are often immediately placed on the at-risk register, regardless of the parenting skills shown.

Professor Craggs is also excited by the potential spin-offs of the research into other areas of disability. If the project results in greater understanding of the changes in the seminal fluids caused by neurological factors, it may influence the treatment of other forms of infertility. He has already had suggestions that he might take men with multiple sclerosis onto his fertility programme, for example. For Lewis and Tracy, however, these wider implications are not what matters. They are concentrating on getting to know the daughter they never thought they would be able to have. But Lewis, at least, has one eye on the future already: "I'd like to think that one day she will be able to have a brother or sister."

Aspire: 020-8420 6721; www.aspire.org.uk

SPINAL-CORD INJURY: THE FACTS

* About 1,000 people each year, some 60 per cent of them men, will suffer spinal cord injury.

* Broken bones in the back and neck can be repaired. But if the spinal cord they protect is damaged, communication between the brain and the rest of the body shuts down, causing paralysis. Some feeling can be retained (an "incomplete" injury).

* As well as movement and sensation, spinal injury can also affect breathing, blood pressure, bladder and bowel function, sexual function and, for men, fertility.

* There is no complete cure, but advances in immediate post-injury treatment mean that more and more injuries are now incomplete rather than complete.