your great life

The Fertility Focus Telesummit is back for 2012

Sarah Holland's Fertility Focus Telesummit launches on the 12th of March. I spoke at last year's Telesummit, and listened to every one of the other speakers, so I believe I can vouch for this worthwhile event. Click here for more information about how you can register for the Telesummit.

This is how it works. The Telesummit is an amazing “virtual event.” It will feature fertility experts from around the world sharing their knowledge and insights on a wide range of fertility subjects. You can listen in to all the information-packed presentations either online or over the phone every day of the Telesummit, starting on March 12th.

Grab your place now to attend this exciting event for free and get fully informed about what you can do to improve your chances of having a baby. Click here for details of all the expert presentations, each covering a different aspect of infertility and all offering great advice, ideas and solutions to help you move further towards becoming a parent.

Careless lab error could destroy a couple's baby hopes

The Daily Mail has reported that a fertility clinic in South Wales has accidentally destroyed a batch of 10 exceptional quality donor eggs belonging to a couple that had been trying to conceive for 7 years. The eggs had been donated by the woman's sister after previous IVF using her own eggs failed. The couple, in their mid-30's, were devastated to learn of the accident by telephone when they returned home from the clinic. All of the eggs had been stored in the same pipette, which was broken when a clinic employee knocked it against a microscope.

Simple human error? Just one of those very unlucky things? Apparently this is not a one-time incident that has cost a patient dearly. The HFEA is reportedly very concerned about the standard of care at the clinic, which also recently destroyed sperm stored by cancer patients for future use. Legal proceedings are being brought against the clinic by the couple involved, who are also calling for a rigorous investigation to prevent this happening to others. The question remains whether the HFEA, the regulatory authority for IVF and other fertility treatment in the UK, is in fact able to effect changes when there is a pattern of poor standards of care and service? Voicing concern is clearly insufficient. It would be understandable if the donor in this case is unwilling to put herself through the hormone treatment and egg retrieval process a second time as a result of this blunder, but perhaps her love and generosity of spirit will prevail. I can only hope that the couple involved finds a new fertility clinic in which they can build trust.

Someone's been a bit too generous

One man; 17 families. No, he's not a bigamist. One British man has reportedly donated sperm to 17 couples, breaching HFEA regulations that limit donation to a maximum of 10 couples, according to The Sunday Times. Does it matter? Actually, yes. The Human Fertilisation and Embryology Authority regulations are in place to prevent the possibility that half-siblings could unknowingly meet and become involved in sexual relationships, thereby potentially parenting children with genetic risks.

In a large country like the United States, with a population of approximately 300 million, the distribution of donated sperm to multiple beneficiaries is not such a big risk. (See my post on Sperm Donor 150, who has 14 known biological children fathered through sperm donation, spread out across the United States.) However, the HFEA has determined that these regulations are necessary in a country like the United Kingdom, which only has about 60 million residents in a relatively small geographical area. Alan Doran, the chief executive of the regulatory authority, admitted this week that others have breached the maximum as well. He announced a crackdown, assuring that the HFEA would be warning fertility clinics that they risk losing their license if they continue to break the rules.

This isn't the first time that we have read about fertility clinics flouting the HFEA guidelines. I'm not sure whether this is simply a case of inadequate monitoring or the inability to follow through and actually impose sanctions. In the case of sperm donation, the risks to offspring could be both physical and emotional. It is important to consider the psychological ramifications to donor-conceived children, who may suffer adversely from discovering that they are one of dozens of siblings born to different families.

I would like to see the HFEA get some teeth. Fertility clinics are profit centres and cannot be expected or trusted to be wholly self-regulating. Since payment of donors is not allowed and sperm donors can only receive fairly minimal expenses for travel expenses and loss of earnings, up to £250 per time, the cost to the clinic is negligible. However, this may also be the reason that men do not come forward to donate sperm, hence the temptation to use the same donor over and over again. There are no regulations regarding how many children each of the 10 permitted families can have via sperm donation, so this one man could have fathered dozens of children who may never know about each other. Those who donated sperm, eggs or embryos after 1 April 2005 are, by law, identifiable, however, this will only happen if the donor-conceived children request their donor’s name and last known address, once they reach the age of 18. It's up to the regulatory authority to put in place as many safeguards as possible. It's also up to them to make sure they are being used.

con·san·guin·i·ty (knsn-gwn-t, -sng-)

n. pl. con·san·guin·i·ties

1. Relationship by blood or by a common ancestor.

2. A close affinity or connection.

"Consanguinity is an important legal concept in that the laws of many jurisdictions consider consanguinity as a factor in deciding whether two individuals may be married." http://en.wikipedia.org/wiki/Consanguinity

I love happy endings: A fertility fairy tale come true

Once upon a time, a young woman from Oxfordshire experienced premature ovarian failure at the age of 24 and thought she could never have children. She told her partner that it might be best for them to part, but he pledged his undying love for her and together, they went on a quest for a solution. They appealed to the local PCT for help, but were turned away on the basis of their age. When they thought all hope was lost, not one, but two, heroes came along to offer them a solution. Claire's sister offered to donate her eggs to the couple and a private hospital offered to perform the IVF procedure for free. The Cousins now have 2 children. The end.

Okay, so that's the fairy tale, with a damsel in distress, a villain, a heroine and the knight in shining armour, but the real story isn't far off. Claire Cousins tried to conceive for 2 years before being diagnosed with premature ovarian failure in 2009. She was told that the only way that she could conceive would be with donor eggs and IVF, however, when she and her husband Gary applied for the treatment through their local Primary Care Trust in Oxfordshire, they were turned down. While the general NHS guidelines permit funding of IVF for women between the ages of 23 and 39, Oxfordshire PCT restricted funding to those between the ages of 35 and 38 on the grounds of their budget. Despite the support of their GP and local MP, their appeals were turned down. The PCT later decided to expand its offering to women from the age of 30, but this still did not help the Cousins. They didn't have the £5,500 it would have cost to pay for the treatment privately.

Nearly three years on, and the Cousins are now a family of four. After some publicity, a private hospital stepped in and offered Claire the fertility treatment for free. Claire and Gary were able to have two children with the use of her sister's donated eggs.

This is just one case that demonstrates the uneven-handedness with which NHS funds are doled out by the various PCTs in the postcode lottery. While the PCTs must use some criteria in their decision-making, shouldn't there be space for them to apply them on an individual basis and make exceptions? Using strict criteria such as a specific age range does not always work, as demonstrated by the Cousins' case. Isn't it just like bureaucrats to tell a 24 year old that she is too young for IVF on the NHS, when she has already hit menopause and has no hope of having children without IVF? (Most women will go through menopause after the age of 45.) This wasn't about a lifestyle choice or misuse of funds, but of necessity. The system and those who run it are merely made to look foolish by these cases of thoughtless application of rules.

Making up for lost time

I was just writing an article for Mindful Mum this morning about when to announce your pregnancy, and thinking about some of the positive news stories about pregnancy which I have heard recently.

• I was really thrilled to read that Amanda Holden has recently announced that she is more than 3 months pregnant. You may have read here about Amanda's devastating stillbirth earlier this year. It's never easy to decide who and what   to tell about a pregnancy that follows a loss like that, and especially when you are in the public eye the way Amanda is. I think she has demonstrated great courage and hope, and wish her well. 
• Lisa Wilkinson, who lost her husband Gareth to bone cancer 3 years ago, now has a 1-year old baby Jack, born of Gareth's sperm through a single cycle of IVF. In Lisa's open letter to Gareth in the Daily Mail, she recounts the decision they made together before he died, the hopes and fears she felt while pregnant and the emotional difficulties she faced during and after the emergency Caesarean birth.   Gareth had his sperm frozen prior to embarking on chemotherapy, as the treatment was likely to make him infertile. He and Lisa initially planned to have IVF once he had recovered from the cancer, but once he knew he was dying, he asked her to have their baby after he was gone.

Before agreeing to allow Lisa to undergo fertility treatment, doctors required Lisa to undergo psychological testing to ensure that she could cope emotionally with giving birth to Gareth's child on her own. While it seems from the article that Lisa resents this requirement to "prove her sanity" and the year-long delay that it caused, I agree in principle. It's important to determine that the reasons for giving birth to a deceased partner's child are sound and will not prevent a woman from healing from her loss, moving forward with her life in a healthy way or raising a baby who is wanted for themselves and not as a living memorial to his father. In fact, Lisa admits to having suffered post-natal depression and anxiety about having Jack on her own, however, she has recovered and is happily raising her now one-year old boy. He also brings joy and comfort to Gareth's mother, who helps out weekly with her grandson.

It's lovely to read about how people find the strength, resources and good fortune to overcome adversity. I"m grateful that people like Amanda Holden and Lisa Wilkinson are courageous enough to share their personal stories with us, as they will surely inspire someone else to meet their own challenges and move forward with their life.

End-of-summer news

Temperatures in England are cooling, everyone is returning from their summer holidays and there is a September mood of "let's get down to business" in the air.  Here's a little of what's in the news this week:

• I have a new, light-filled, private and cosy office in my garden which will be ready later in September for client sessions. I look forward to sharing it with you as soon as possible.
• Beyonce's having a baby!  The 30-year old global star, who totally rocked Glastonbury in June this year, has proudly announced her pregnancy.  It's so nice to hear some good news directly from the source, rather than the gossip magazines. I'm wishing her good health, happiness and an easy birth.
• Too posh to push? NHS North Yorkshire and York has banned elective caesarean sections on the basis that it costs twice as much (L 2,539) as a natural birth (L 1,324)and poses higher risks for mother and baby.  Currently, 1/4 of British births are by C-section. 
• Pre-implantation genetic diagnosis allows screening of embryos for genetic disorders.  One London couple, Jay and Ami Bharvada, went through 4 cycles of IVF to find an embryo that was both free of Wiskott-Aldrich syndrome, a rare genetic disorder, and a tissue match to their son Jivan who is afflicted by the disease.  Untreated, the boy would probably not live past age 10.  Eventually, the couple had a daughter through IVF whose umbilical cord will contribute stem cells vital to their son's recovery. She will then provide further life-saving aid through a bone marrow donation to her brother.  Now, the couple says that they will go ahead and give life to the remaining frozen embryos once their son's health improves.  Their religion, Jainism, has guided them in their decision not to destroy the surplus embryos.  They have launched a charity to raise awareness of storing stem cells from the umbilical cord and donating bone marrow:  Chance to Live.

Do you have fears concerning a vaginal birth that you would like to conquer?

Are you faced with a huge decision about fertility treatment, storing or discarding frozen embryos?

For information about how coaching and EFT can help you, email me directly: [email protected].

Stepmums can be denied NHS fertility treatment

This morning on The Wright Stuff, presenter Matthew Wright posed the question whether stepmums should be denied IVF treatment because they have (someone else's) children in their life. This isn't the first time I have heard of this. There have been occasions in the past when Primary Care Trusts (PCT) have denied fertility treatment to women whose husbands already had a child, albeit with another woman, or who have had children themselves in previous relationships. It's an example of bureaucratic policy making that doesn't take into account the human experience of the people it is meant to serve.

Susi Henson, a 33-year old woman has been denied IVF because her partner has a 20-year old son from a previous relationship who she has never even met.  This seems like blind adherance to a rule that does not take into account her medical condition, Polycystic Ovary Syndrome, that prevents her from conceiving. The Nottinghamshire County PCT has ignored the true facts surrounding this woman's childless status, in favour of a view that this is not a "childless couple."  However, in no way could Susi Henson ever be considered to have had the opportunity to parent her partner's child, considering that he is only 13 years younger than she is and lives in Wales. 

Some of the points made by Wright and his guests, including Anne Diamond, concerned the limited NHS budget, whether everyone has a right to have children, whether everyone who needs IVF should be able to access it free and how many cycles of IVF should be alotted per patient. There will always be controversy, as long as individual PCTs can use their own criteria for eligibility. For instance, Wright mentioned that about one-third of PCTs will allow patients who are smokers to access IVF, even though smoking is known to inhibit conception, raise the chances of miscarriage and impact upon the health of the foetus during pregnancy and after birth. It is, perhaps, the uneven and confusing allocation of fertility treatment that galls people the most. 

A caller to the programme, Katie, was also denied IVF which she needed due to blocked fallopian tubes because her partner had adult children.  She eventually managed to save the money for private treatment and is now the mother of a 5-month old baby, but considers the financial hardship it caused to be unfair.  Susi Henson phoned in to the show to say that she has received a lot of public support, as well as a phone call from one of the policy-makers who has promised to review her case and the PCT's policies on IVF treatment. However, the policies are only reviewed in April each year. Matthew Wright emphasized the inadequacy of this offer, pointing out that the delay of nearly a year could negatively impact upon Henson's chance of conceiving, as age is an essential aspect of a woman's fertility.

Even if a woman is the stepmother to her partner's young children, and partially responsible for their upbringing, should she be denied the ability to have her own children? By definition, those children have, or had, a mother already. Step-parenting can be difficult and is not always loving or even cooperative, depending upon the degree of amicability between the estranged parents of the children involved, custodial arrangements and other emotional factors. While step-parenting may fulfil some women's needs, others will never see it as an adequate replacement for the experience of giving birth to, raising and loving her own children. Further, it is entirely natural for a couple to want to create a family of their own.

If a woman meets all other criteria for fertility treatment on the NHS, and it is deemed medically necessary in order for her to conceive, it seems cruel and unjust to deny her that chance. Most women have no inkling of their infertility until they have begun trying to conceive, therefore, they will not had the chance to take it into account when agreeing to marry someone who already has children from a previous relationship.  Ironically, they may have had an easier time accessing NHS treatment is they were single, as many PCT's will allow IVF to single women.  This is symbolic of the incoherence and uneven-handedness of the present policies existing across the UK. If we are to ensure a fair allocation of NHS funds for fertility treatment, wouldn't it be better to look at the people concerned and make more individual decisions? Matthew Wright thinks an IVF ombudsman could work. I like the idea of individual, people-centred decision making, but I imagine I can already hear cries of alarm about the cost involved in that: how many IVF procedures could have been paid for with the salary of the ombudsmen?   

You know about the National Lottery and Euromillions, but have you heard of the IVF Lottery?

We are used to hearing about how the National Lottery or Euromillions has changed someone’s life, but have you ever contemplated a lottery that can actually result in new life? The UK charity, To Hatch, has just been granted a license by the Gambling Commission, allowing it to sell lottery tickets online. The prize, to be awarded monthly, is £25,000 worth of bespoke fertility treatment at one of the UK’s top clinics.  Camille Strachan, the founder of To Hatch, has told the media that the lottery is more like a raffle, open to single, gay and older people as well as couples who have not been able to conceive.  She explained “This is not a wacky stunt; it is about helping desperate people who cannot afford to go [for fertility treatment] privately.”

Criticism has been harsh - The plans for the IVF lottery were released to the media this week, prompting a flurry of comments by spokesmen from public interest groups and regulators, including the Human Fertilisation & Embryology Authority (HFEA), the British Fertility Society (BFS) and Comment on Reproductive Ethics.  All three voiced concern and negativity, the HFEA’s position that “using IVF as the prize in a lottery is wrong and entirely inappropriate.” While headlines branded it the “win a baby” monthly lottery, what is really being offered is access to treatment and a few conveniences such as accommodation in a luxury hotel, chauffeur-driven transportation from the hotel to the fertility clinic and a mobile phone for constant contact with doctors. 

A dream come true? - On the face of it, that all sounds like a dream come true for anyone who has failed to access fertility treatment through the National Health Service (NHS) due to age, the birth of previous children, their Primary Care Trust (PCT) insufficient budget or those who can’t afford private treatment.  There would be a dozen lottery winners a year and the profits, approximately 20% of ticket sales, would go to Strachan’s charity, To Hatch, which offers fertility information and advice to members.  Even for those who have already been footing the bill for IVF themselves, I anticipate that many would appreciate being pampered a bit while undergoing stressful treatment.  

The patient's perspective - Having felt the desperation associated with infertility myself, I will admit that if I was still trying to conceive I would be tempted to buy a ticket for the IVF lottery. After all, with a lottery win, the time I spent consulting different doctors, going for lab tests, crying over the failure of the NHS to offer me help, trying to find the money for treatment and choosing a clinic, could have been spent feeling lucky, supported and hopeful. Furthermore, this is in no way a chance to “win a baby” as the news headlines are screaming. At its best, this scheme offers someone who wants a baby, not only the chance to pay for treatment, but also the ease of access to quality treatment in the UK that Strachan will provide. Let’s not forget, that plenty of UK residents who have been frozen out by the NHS restrictions on fertility treatment look into fertility tourism schemes that require them to go to the US, other European countries and India for treatment. The risks presented by treatment abroad include the lack of continuity of care and the differing regulations regarding fertility treatment.

The most substantive concern over what the IVF Lottery will actually provide centres on the possibility that winners could access donor sperm, donor eggs or even the services of a surrogate to carry their baby. Josephine Quintavalle from Comment on Reproductive Ethics demanded to know “surely it is not legal to pay £20 to have access to another woman’s womb?” Isn’t she missing the point? The surrogate wouldn’t be paid £20. The proceeds of the lottery win would be used to compensate her appropriately, within the restrictions imposed by law.  Does it matter from whose pocket the compensation actually comes?  Furthermore, there is no suggestion that winners are guaranteed to conceive, give birth to or otherwise receive a healthy baby; participating doctors will still be governed by medical ethics and regulations.

Other schemes already exist to defray the costs of treatment, such as the practice of offering fertile, gay women free or discounted IVF in exchange for their surplus eggs, which are then “sold” to infertile patients at the clinic. This is euphamistically called "egg sharing." US fertility clinics run promotions offering free IVF, from which they build a mailing list, gain media attention and can claim to be philanthropic. One of these, the Fertility Treatment Center in Scottsdale, Arizona, is currently running a promotion on their website: “Enter to win a FREE IVF Cycle worth an estimated $15,000. Open to the first 100 guests ONLY...RSVP today!” This type of promotion has already made an appearance in the UK; earlier this year, the Genetics & IVF Institute in Virginia and the London Bridge Centre offered a free cycle of Donor IVF to one attendee of their joint seminar in London.  

If nothing else, the controversy over Strachan’s plans is positive; forcing more attention to be paid to the plight of those who can’t access appropriate fertility treatment in the UK.  We need to keep the spotlight on the medical, lifestyle and environmental causes of infertility, the inability of the NHS to meet the demand for fertility treatment and the advances in medical science that could allow more people to create families of choice.  I doubt that there would be this level of controversy if there was a cosmetic surgery lottery, a bariatric surgery lottery or a hip-replacement lottery.  When balancing the arguably sensational and gimmicky nature of a lottery against the hope and joy it could give someone who wants a baby, I would have difficulty pointing the finger of disapproval at anyone who decided to give it a try.

The team behind Fertility Road and the Fertility World Show launch Pink Parenting

Congratulations to Jeff Crockett and Giorgiou Severi on the upcoming publication of their new glossy magazine, Pink Parenting, next month and on Tuesday's feature in i, the mini-newspaper put out by the Independent.  If you don't know of them already, Jeff and Giorgiou are also the publishers of European glossy, Fertility Road, as well as the team behind the Fertility World Show which debuted in London this year.

Same-sex couples who are parenting have been in the public eye this year more than ever, as celebrities lead the way in talking about their new families, including Elton John and David Furnish, pop star Ricky Martin, and actresses Cynthia Nixon and Jane Lynch.  Meanwhile, behind the scenes, gay couples have been quietly creating families through sperm donation, surrogacy and adoption.  Under the Adoption and Children Act of 2002, same-sex couples have exactly the same right as heterosexual couples to adopt in England and Wales. In practice, however, it hasn't always been so straightforward for gay couples to find the help they needed to create their families of choice. Thankfully, this is now turning around, with research and polls suggesting that:

• same-sex parents can make better parents than a woman and man;
• children of gay parents are no more or less likely to be gay; and
• approximately 64% of people think that same-sex couples should be allowed to adopt.

I wish Jeff and Giorgiou every success in their new venture. As Giorgiou said about gay surrogacy and adoption in i, "the world is ready for it now.

Fertility World Show, NEC Birmingham, 22 - 23 October, 2011.

 

Medical tourists to the UK drain our taxpayer-funded health service

Once again, the allocation of taxpayer funds for IVF and maternity care is in the news.  This story concerns a Nigerian woman who was prescribed Clomid, a fertility drug that stimulates the production of eggs, in her native country. She then came to the UK knowing she was pregnant and subsequently gave birth here to quintuplets.  Her care, and that of her five newborn babies, has cost the taxpayer 200,000 pounds already.  Bimbo Ayelabola, 33, would like to stay in the UK, rather than return to Nigeria, claiming the babies, born on April 28th, are too fragile to travel.

Ayebola's presence in the UK at the time of her children's birth meant that she was provided with free maternity and post-natal care. Her delivery by caesarian section at Homerton hospital in Hackney, London, required the involvement of Consultants, midwives, operating staff, social workers and health visitors. The premature babies were then cared for in a special-care unit.  She is unable to pay back the NHS for the treatment they received, as she is already struggling to pay for the most basic items of food and nappies. As she is not entitled to claim benefits or work in the UK, her ongoing presence here would continue to drain public funds. Eventually, her housing needs will need to be addressed as well, as she is currently living in a 2-bedroom flat with her sister and the quintuplets, while her husband remains in Nigeria.

Balancing an individual's needs against the public interest - Upon hearing of Ayelabola's previous miscarriages and anxiety regarding this pregnancy, it may be understandable that she did what she could to protect herself and the babies. She has a better support network of friends and family here. Moving to the UK specifically to make use of the NHS is an attractive proposition.   However, NHS funds are stretched to the limits already, causing many who are legitimately under its care worrying that they will be denied treatment. While it bills foreign nationals who do not have a right to free medical care in the UK, the NHS has little hope of receiving that money from people who purposely travel here with undisclosed medical issues to take advantage of the system. According to The Sunday Times, the government has instituted rules recently that deny overseas visitors entry if they owe more than 1,000 GBP from a previous visit, but that still leaves alot of room for someone to come in to the country just once, like Ayelabola, and drain its resources.  

Who is responsible? It would have been impossible for immigration officials to know that Ayelabola was 3 months pregnant in December, let alone with 5 babies, when they issued her a 6-month visitor visa.  They can only go on information provided, and she kept that vital bit of information to herself. When a woman presents herself at a hospital, about to give birth, maternity care is provided first and questions asked later, to ensure the safety of mother and children. Both systems were abused. In this case, while Ayelabola has relatives and friends in the UK, they don't seem to be stepping up to take care of their own. Approximately £7 million in bad debts and claims were abandoned in respect of overseas patients in 2009 - 2010, according to the Secretary of State for Health. 

The impact on public opinion - Some will use this as an excuse to criticize the delivery of funded fertility treatment and maternity care. We frequently hear an outcry about who should and shouldn't be entitled to care, including one this week regarding a single mother who received IVF on the NHS. There are those who believe that having children is a right to which they are entitled and others who believe it is a blessing that is, unfortunately, not universal.  While Ayelabola did not have NHS-funded IVF, the fact that her quintuplets were born as a result of fertility treatment, will link her case in people's minds with the financial burden on the taxpayer due to fertility treatment. I don't see it that way. Unfortunately, all systems are subject to abuse. I would rather have funded treatment available to all who are entitled to it and deal with the minority of questionable cases as they come up.

What now? - I haven't seen any official comment on how or when the quints would be fit for travel, but I don't see why the Home Office couldn't require a return to Nigeria based upon medical clearance, rather than an extension of 6 months to Ayelabola's visitor visa or allowing her permanent residency. The problem is that allowing Ayebola to stay here indefinitely; 1) increases the cost to the taxpayer, 2) lowers public tolerance for NHS-funded fertility treatment, including premature and multiple births and 3) opens the door for others to try the same tactic. Unfortunately, without knowing of any extenuating circumstances that would threaten the health or safety of Ayebola and her children, I have to come down on the side of public interest this time.