Cancer dad who went through IVF despite knowing he won't live to see his baby girl grow up

Cradling his newborn baby for the first time is a huge milestone in any father’s life – one of those moments he will never forget.

But for Eamon Gorman, who has had chemotherapy every other week for the past two years, holding his little Maisie, was extra poignant.

Because Eamon does not know if he will live long enough to see his beautiful little girl grow up.

Eamon, 35, is being treated for bowel cancer. “When I held Maisie in my arms, I knew every battle had been worth it,” he says.

“I’m certain positive thinking and living for a future have kept me alive.

“I don’t want to know how long I’ve got, because I refuse to give up on life.”

Eamon’s wife Kate agrees. “We don’t talk about the sad stuff. Eamon is so strong, we just try to enjoy the time we have together and do nice things as a family.”

His diagnosis in July 2007 turned their world on its head. Eamon had started feeling ill on a flight home from Cyprus, but his only symptom was frequent toilet visits.

Until then he’d been fit and healthy. But within days his doctor referred him to hospital for bowel tests.

Kate, 28, says: “I was called in from the waiting room to be with Eamon. The consultant told us he was fairly sure it was bowel cancer.

“That moment our lives changed.”

A week later bowel cancer was confirmed, and subsequent scans revealed the tumour had spread to his lymph nodes, carrying rogue cells to his liver and his lungs.

Eamon says: “I decided to remain positive.

“When I was told it was cancer, I thought: ‘I can beat this.’ Then when I was told it was terminal, I thought: ‘Well, I will live as long as I possibly can’.”

Eamon didn’t want to know the prognosis.

He says: “If they had given me a date, I’d have seen it as a death sentence. I decided I’d rather not know so it wouldn’t put limitations on me or our life. Instead, I chose to take one day at a time.”

The news of Eamon’s illness had so many implications, not least his loss of fertility. So when the nurse asked straight after diagnosis if they wanted to freeze some of Eamon’s sperm, they immediately agreed.

Kate says: “I’m so grateful to that nurse because if she hadn’t asked that question, we wouldn’t have thought about it. Even though Eamon had a terminal diagnosis, we’d always planned to have children – it was at top of our list – and his cancer didn’t change that. We had already started trying.”

The couple had been planning to marry a year later but brought the wedding forward to August 2007, five weeks after Eamon’s diagnosis and two weeks after he started chemotherapy.

By then he had also provided the sperm which they hoped would allow them to start a family.

Kate, a part-time trainer, recalls: “It was a fantastic day of celebration.”

There was no honeymoon because Eamon needed chemo the day after the wedding.

As his treatment continued, the couple waited to find out whether they would be allowed to have IVF on the NHS.

A month after the wedding they went to the Queen’s Medical Centre in Nottingham for tests, and were referred under the NHS for proposed IVF treatment at the CARE Fertility Group in Nottingham. The couple had to have counselling, and their case had to be reviewed because of Eamon’s terminal diagnosis.

“It wasn’t until the following March that we finally got the go-ahead,” says Kate. Fertility treatment started in May 2008 when 12 eggs were removed from Kate, then two were injected with Eamon’s sperm to fertilise them and re-implanted.

Two weeks later the home pregnancy test was positive.

“We were in shock. I hadn’t dared to get my hopes up, but it was a dream come true,” recalls Kate.

Eamon adds: “We couldn’t believe there was good news after so much bad news. We were almost panicky with excitement!”

Kate did three pregnancy tests just to be sure – a scan confirmed everything was fine, and Eamon continued with fortnightly chemotherapy.

“Knowing Kate was pregnant kept me going,” he says.

Another high for soccer-mad Eamon was meeting the England football team last year thanks to the Willow Foundation charity, which provides morale-boosting experiences for people with life-threatening conditions.

But even that was no match for the joy of seeing his daughter Maisie Elizabeth born at the Royal Derby Hospital on May 17 this year.

Sadly Eamon was taken to hospital the next day after a bad reaction to the anti-cancer medication he was taking.

“That was a low point,’ says Kate.

“I’d just been allowed home with our new baby but Eamon wasn’t with me – he was being admitted to hospital as I was leaving.”

Support from friends and family kept the couple going, and a change in Eamon’s medication meant he was home with his wife and newborn daughter the following day.

Eamon is still having chemo but now has treatment at home in Derby to be with his wife and daughter.

“I will have a scan in November to see if the chemo is working. If it is, we would love to try for baby number two,” he reveals.

“I know some people will say I’ve brought a baby into the world who might end up without a father, but what’s important is that Maisie knows her father loved her very much.

“It upsets me to think I won’t see her grow up, but we take lots of photos and videos so she has memories of me.

I do think about how Kate will cope when I’m not here but that’s one reason we would like to have another child, so Maisie has a brother or sister. I spend all my time with her so we can build memories of our time together.”

Eamon, who is off sick from his job as a team leader, has signed legal documents giving Kate consent to use his sperm after his death, but she tries not to think about life without him.

“We never talk about how long Eamon has. We stay positive for each other and try to live life to the full.”

Eamon remains positive too. “Every day I wake up and tell myself I’m going to fight this, and everything’s going to be all right. I don’t feel sorry for myself.

“These are the cards I’ve been dealt so I get on with life rather than spend my days thinking about death.

“I consider myself lucky – I’ve met the girl of my dreams, and we have the most beautiful daughter.

“Every day I get to spend with my girls makes my life all the more precious.”

Dr George Ndukwe, medical director of CARE in Nottingham where the couple had IVF, said: “We are delighted to have helped Kate and Eamon. They have been through so much and we wish them all the best.”

Women denied NHS fertility treatment because 'they cannot carry child themselves'

Women have criticized the situation saying only a 'quirk of nature' means they cannot carry their own child and if they were suffering from a different fertility problem the NHS would fund treatment.

Guidance on NHS funding for fertility treatment has been interpreted differently around the country meaning that in some places women who cannot carry their own child are funded but in others places they are not.

In many areas primary care trusts refuse to fund IVF because the resulting embryo would be implanted in the womb of a surrogate, even though the patients are willing to fund the surrogacy costs themselves.

The guidance from the National Institute for health and Clinical Excellence states that where the reason for infertility is known patients should be fast-tracked for NHS funded treatment but it goes on to say surrogacy lies outside the remit of the guidance.

This is what primary care trusts are using to justify refusing to fund IVF treatment for women who would require the services of a surrogate.

Sabreena Mahroof, of Surrogacy UK, said in around 80 per cent of cases IVF treatment must be pad for privately because primary care trusts have refused NHS funding. But some areas will fund the IVF part of the process leaving patients to pay the surrogacy fees.

She said: "It all depends on the primary care trust. There is a real postcode lottery here. We had hoped the new Human Fertilization and Embryology Act would clarify this situation but it has not.

"It is a real nonsense. These women are being discriminated against because they do not have a womb. Cost-wise it is no different to funding an IVF cycle where the embryo is implanted back into the same woman.

"No one is asking the NHS to fund the pregnancy expenses of the surrogate, that would be unfair.

"It is not fair that only the wealthy who can afford private IVF who can use a surrogate."

Tracey Davey, 40, from Fareham in Hampshire, has been trying to have a baby with her husband Terry, 48, for the last 12 years. She was born without a womb but produces eggs normally.

The couple have repeated been turned down for NHS funding for IVF treatment, been through appeals and have even attempted to adopt.

Eventually the couple remortgaged their home, spending £18,000 on private treatment, undergoing two cycles of IVF treatment.

Last year an embryo was implanted in a surrogate mother only for the pregnancy to fail.

The couple cannot afford to fund another cycle of treatment themselves and time is running out as a woman's age is a significant factor in IVF success.

Mrs Davey, a bank cashier, said: "I have been fighting this for the last 12 years and am angry at the way I have been treated. I did not ask to be born this way and is there was something else wrong with me my treatment would be funded.

"There are dozens of young girls in my situation and I hate to think that they will face the same thing as us.

"I feel they have put my life on hold. I was told that I could not have children when I was 16 but then in 1989 a woman became the first surrogate mother in the UK and that gave me hope. I cannot give up."

Clare Lewis, of Jones of Infertility Network UK said: “Surrogacy is a necessary treatment for those whose only chance of having a family is by this method.

"We are aware that many primary care trusts don’t fund surrogacy, probably because of concerns of legal ramifications and we would suggest that national guidance on this issue would be welcomed by the PCTs to eliminate such concerns and allow patients to access the treatment they need to have the family they so badly want.”

Dr Stuart Ward, clinical director of NHS Hampshire said: “We will fund one cycle of IVF for patients who meet the eligibility criteria. However, due to the complex legal and ethical complications that can arise with surrogacy we are unable to support fertility treatment through this route.

“If a consultant or GP feels that their patient has exceptional circumstances and should be considered for IVF treatment, even though they don’t meet the criteria, they can ask for the case to be considered through the PCT’s special referrals process.”

Current rules mean surrogate mothers can decide legally to keep the child, meaning many people still see the issue as fraught with controversy.

Around 50 successful surrogacies occur each year in Britain.

Blunder at top clinic sparks fresh IVF fears

A serious blunder at one of Britain's top fertility clinics dramatically increased the risk its patients would suffer a miscarriage or give birth to a child with serious health problems, sparking fresh fears about how IVF centers are run in the wake of a series of scandals.

Unscreened sperm used by staff at the London Women's Clinic (LWC) to create dozens of embryos was later found to have a chromosome abnormality that could have been passed on to any unborn child, The Independent on Sunday has learnt. The British Fertility Society's screening guidelines make it clear that the clinic should never have accepted the donor. At least one couple suffered a miscarriage as a direct result.

The blunder constituted the most severe mistake that a clinic can make, according to the Human Fertilization and Embryology Authority, which regulates the multimillion-pound IVF sector. In future, the watchdog will name and shame clinics for similar incidents under new rules to expose mistakes and near misses.

Fertility experts believe the LWC's error could be the "tip of the iceberg", and that it raises serious concerns about how the industry is regulated. It is the latest in a series of high-profile incidents, including a couple's last viable embryo being implanted into another woman, and eggs fertilized with the wrong sperm, forcing three couples' embryos to be destroyed.

Guy Forster, a solicitor at the law firm Irwin Mitchell who has represented several couples who have suffered mix-ups, said: "It's fair to say the problem is widespread. The HFEA must do more to ensure clinics meet their responsibilities, and clinics must pay more attention to systems they have in place and not just to success rates."

Dr Sammy Lee, a London-based fertility expert, said the HFEA was failing to ensure clinics followed guidelines. "It's a problem of compliance. The HFEA must make clinics adopt pharmaceutical-style quality audits."

The most recent HFEA figures show there were 182 "incidents" at clinics last year, eight of them serious. But lawyers believe the actual figures could be far higher. Several couples are pursuing legal proceedings.

The London Women's Clinic, one of the UK's top three fertility centers, was warned in the HFEA's latest inspection report last January, after inspectors found its staff failed to carry out "a number of witnessing stages", vital to ensure processes such as sperm screening are done correctly.

Yet as recently as June, the clinic was still using embryos created with unscreened sperm, according to one couple who spoke about their ordeal. At least 11 other women are thought to have had treatment using the sperm, including three couples who had frozen embryos in storage. The clinic, in Harley Street, does 1,300 treatment cycles annually and recently recruited more staff to cope with demand.

The prospective mother, who spoke on condition of anonymity, said she suffered a miscarriage as a result of the blunder. The couple paid £15,000 and wasted more than a year trying to become pregnant. "It's left a very bitter taste. We felt that the clinic failed at a very basic level to provide a service we had paid for," she said.

Allan Pacey, secretary of the British Fertility Society, which draws up sperm- screening guidelines, said spotting the abnormality should have been "pretty standard". The couple had to destroy all 22 frozen embryos created with the unscreened sperm. They then faced a bitter compensation battle with the clinic. "It made us so aware that IVF is a business and it all comes down to money," they said. In the end, the clinic paid for them to undergo a further cycle of treatment abroad, and they are now expecting a baby.

Dr Kamal Ahuja, head of the LWC, insisted "all necessary screening" was done on donor sperm. He added that two affected couples had later had healthy babies.

An HFEA spokeswoman said it had audited all the stored samples at the LWC after it was notified about the incident.

Demand for IVF is soaring. Recent figures show the number of treatments rose by 6 per cent in 2007 to nearly 47,000.

Lying down after artificial insemination improves pregnancy rates, study shows

A study in the Netherlands has shown that lying down following artificial insemination, also known as intrauterine insemination (IUI), increases the chances of pregnancy by 50 per cent.

The findings, published in the British Medical Journal (BMJ) last month, revealed that 27 per cent of women who remained in a supine position following treatment for 15 minutes achieved a live birth, compared with only 17 per cent of those who got up and moved around. In total, 391 couples aged between 18 and 43 took part in the study, which took place across several hospitals in the Netherlands. Each couple received up to three cycles of insemination and were split into two groups - one remained immobilised immediately after treatment and the other, the control group, were asked to walk around.

Lead author Dr Inge Custers, from the Academic Medical Center in Amsterdam, said that the pregnancy rate for the immobilised group was 'significantly higher'. He explained that 'immediate mobilisation might cause leakage [of the sperm]', which may take longer to reach the fallopian tubes if the woman is moving around. 'As immobilisation is easily done and carries very little cost, we suggest incorporating immobilisation as a standard procedure in intrauterine insemination treatment', said Custers, adding that clinics in the Netherlands were already adopting the method. However, there is concern that extending the period each bed is used in clinics could mean that clinics treat fewer patients. Custers said that improving the success rate of IUI will be more economical for patients. 'Although immobilisation takes more time and occupies more space in busy rooms, the intervention will be economic in the long run, as pregnant patients will not return in subsequent cycles,' he said.

In an editorial piece which accompanied Custer's publication in the BMJ, Professor William Ledger, from the Academic Unit of Reproductive and Developmental Medicine at the University of Sheffield, said that there remain many unexplained factors that need to be explored, such as the optimal length of time a woman should remain immobile following treatment to achieve pregnancy. He also noted that it was not clear what proportion of women in the study were given drugs to stimulate their ovaries to produce eggs and expressed some doubt over the benefits of remaining immobile. 'Such postcoital positioning was advocated in the United States many years ago but did not seem to improve conception rates after sex,' he said. He also warned that the overall pregnancy rate achieved in the study is somewhat lower than can be expected in Britain.

Ledger said that clinics should perform their own studies in the 'real world' to test Custers' findings. If further studies confirm the findings of the Netherlands team then he agreed that some couples will be spared the cost of IVF (in-vitro fertilisation). Artificial insemination is cheaper than IVF and requires minimal drug treatment. It is often used prior to IVF and success rates vary from 5-70 per cent, according to Ledger.

Moving surrogacy law forward in the UK?

Of all the prospective parents conceiving through assisted reproduction, those in surrogacy arrangements often face the most difficult legal issues. The surrogate and usually also her husband will be treated as the child's legal parents at birth, leaving the commissioning parents with no legal connection with their child whatsoever, even where both are the biological parents.

There is a special remedy available called a parental order. This is an order made by the family courts which reassigns parenthood after surrogacy, extinguishing the responsibility of the surrogate parents and transferring it to the commissioning couple. The process takes place post-birth: the application must be made within the first six months of the child's life (though the surrogate's consent is ineffective until after the first six weeks) and typically takes many months to be processed by the courts. At present, only married couples can apply, but as from 6 April 2010, unmarried and same sex couples will also be eligible.

The Department of Health (DH) is currently consulting on new draft regulations which prescribe the detail of this court process, and which will replace existing regulations that have been in place since 1994. The consultation closes on 23 November.

What is in the draft regulations?

Like the existing regulations, the proposed revised regulations apply provisions of adoption law to the parental order application process, setting out court procedure and giving a surrogate child broadly the same legal status as an adopted child. Adoption law has itself been overhauled substantially in recent years, and this is reflected in the wording of the new regulations. However, as part of the general updating, there are some important revisions being made to the existing parental order system which need to be looked at carefully.

For example, a court considering whether to grant an adoption order now has to first consider the 'welfare checklist', a prescriptive list of considerations which includes ascertaining the child's wishes and feelings and considering his or her relationship with the birth family. The new parental order regulations incorporate this checklist into the parental order process. However, it does not seem appropriate for the court to have to address all these issues in surrogacy cases, given that the child will inevitably be less than six months old, and will be already living with the applicants (at least one of whom is his or her biological parent).

Importing the new adoption law without amendment fails to adequately take account of the special nature of surrogacy arrangements, and there may be a risk that this could make the process of applying for a parental order even more onerous than before. While a parental order is similar to an adoption order (in the sense that it transfers legal parenthood from one person to another), surrogacy is very different from adoption. Because a surrogate child (or at least those to which parental orders can apply) is biologically connected to at least one of the commissioning parents and is almost invariably in their care from birth, the dynamic of the family is perhaps closer to donor conception than to adoption. Adapting adoption law is therefore a difficult task, and one which we think could be handled more carefully by the regulations.

The parental order system

Even though a more fundamental review may not be within the power of these regulations, it seems impossible to look at any legislation relating to parental orders without making the point that the whole system is problematic. Parental orders were introduced as a late amendment to the Human Fertilisation and Embryology Act 1990 in response to a specific surrogacy case. At the time, surrogacy was viewed as very rare and something which occurred largely on the fringes of the law and ethical acceptability. The 1990 rules on legal parenthood clearly prioritised donor conception (making the carrying mother the legal mother, and her husband the legal father), and parental orders were designed as a limited remedy - a 'sticking plaster' - in respect of the awkward application of legal parenthood rules in surrogacy situations.

As all those working in this field know, things have changed radically since then. Surrogacy as a form of fertility treatment has blossomed, both in the UK and abroad, and no longer affects just a small number of altruistic inter-family arrangements. Indeed, the Human Fertilisation and Embryology Act 2008 itself has endorsed this, by legalising non-profit making surrogacy agencies like Surrogacy UK and COTS and extending the categories of couples eligible to apply for parental orders. We are also seeing growing numbers of fertility patients travelling abroad for surrogacy, which brings even more complex legal challenges.

The current system, which came about by historical accident rather than a concerted policy decision, fails to meet this increased demand, and is inadequate from almost every perspective. The surrogate and her husband (who, in the vast majority of cases do wish to surrender the child) remain legally and financially responsible for the child for up to a year after the birth, and may have no legal redress against intended parents who refuse to assume responsibility. The intended parents often have no status in respect of their child for many months, including no right to make decisions or to consent to immunisations, no right to transmit inheritance or citizenship rights automatically and the intending mother has no rights to maternity leave (though this is the subject of another current campaign), leaving children very vulnerable during the early months of their lives.

The system is not an effective guardian of public policy against commercial surrogacy, since the check on payments comes at the end the process (by which time any payments have already been made) and the only sanction available to the court is a refusal to grant an order, which is almost impossible to enforce since this would prejudice the welfare of a newborn child. And, most importantly of all, these problems mean that surrogate children lack even basic protection. The problems are highlighted most starkly in foreign surrogacy cases. For example, in the landmark case of Re X and Y (foreign surrogacy) [2008], the law left surrogate twins born abroad to a British couple stateless and parentless. Such children risk being abandoned to foreign state care in the absence of complex and expensive legal intervention - surely this is an outcome which the law has an obligation to avoid at all costs.

We need a better and more planned approach to surrogacy. Of course, there are difficult and sensitive issues to be handled in creating new law. Surrogacy arrangements are among the most ethically and humanly complex in assisted reproduction, with three or even four adults involved throughout the process of conception, pregnancy and birth, and possibly third party gamete donors as well. The respective interests, protection and independence from exploitation of all these adults and, most importantly, the resulting child, need to be adequately balanced and protected by the law.
It is disappointing that such issues were not properly addressed during the government's overhaul of assisted reproduction law last year. Although the Minister indicated that surrogacy was a sensitive issue which would be looked at separately, no firm commitment for this review, or a date, has yet been set - and it seems, given the current 'status' of surrogacy - odd to continue treating it separately. In order to ensure that our law can cope with the demands of modern surrogacy practice, and to ensure that vulnerable children are protected, we urge the government to take a fresh look, not only at the regulations, but at the law itself.

By Natalie Gamble and Louisa Ghevaert
Partners with specialist fertility law firm Gamble and Ghevaert LLP (www.gambleandghevaert.com)

The Sonic Skater

Mental Humor

Yesterday, I was walking along the fence to the hospital's mental wing
and I could hear a chorus of patients in the courtyard shouting, "13....13....13....."

I couldn't see through the fence, but I saw a small peephole in the
planks, so I looked through to see what was happening.

Some idiot squirted me in the eye with water!

Then they all started shouting, "14....14....14......"

After a brief recovery, I almost laughed up my lunch.