10.27.09
How far would you go to have a baby?
Today, I read this article in the Irish Independent newspaper and my personal opinion is that it is unnecssarily sensationalist in tone. The headline alone is not exactly restrained:
I’ve spent €30,000, risked my own health and taken on a second job to pay for IVF treatment
And just look at the opening paragraph:
Just how far would you go to have a baby? Would you get into debt? Would you risk damaging your own health? And would you know when to say stop?
Read on and let me know what you think?
For the ever-increasing number of couples whose passage to parenthood is difficult, those risks are all too real. As more and more women delay starting a family — the average age of a first-time mum in Ireland is now 31 — the demand for IVF and other fertility treatments, with all the attendant complications, has also grown. Desperate for a baby and longing to start a family of their own, couples can find themselves facing some very tough choices.
To date, Siobhan Tobin (30) and her husband Thomas (34) have spent almost €30,000 trying to conceive. Already proud parents to Thomas and Jamie, their gorgeous 10-year-old twin boys, two years ago, Siobhan and Thomas decided to try for more children. Within weeks of trying, Siobhan fell pregnant — once again, with twins. But just two months later, she miscarried. “It was devastating. It was the worst feeling I’ve ever had,” she says.
But worse was to come. Following two D&Cs performed after the miscarriage, Siobhan developed scar tissue in her womb — a common complication known as Asherman’s Syndrome — which left her struggling to conceive again. The months to come would be an exhausting emotional rollercoaster for the Tobins, from the initial confusion and distress of not knowing what was wrong to the heartache of realising they were unlikely to conceive naturally again.
In their bid to tackle the problem, they’ve visited doctor after doctor, from the plush private rooms of Harley Street in London to a Hamburg clinic, to hospitals here in Ireland. Now they have been offered new hope by a top UK specialist who believes he can help the couple get pregnant again.
Today, Siobhan, having twice had surgery to repair the lining of her womb, continues to take expensive hormone treatment.
The financial burden has become part and parcel of everyday life.
Siobhan, a beauty therapist, has taken on a second job to pay the bills while Thomas, a courier, regularly puts in extra hours. Most of their savings have been poured into the struggle to conceive while at the same time paying a mortgage and bringing up the twins. With all their extra cash spent on medical bills, holidays, for now, are a thing of the past.
‘I know that all of this seems mad, especially for someone who already has two children,” Siobhan admits. “But the way I see it is this: where do you draw the line? Do you say, ‘yes, I will spend €15,000 on this, but not €15,500? Because you never know how far away you are from success. You could be just one step away from getting pregnant.
“If I had to borrow money, I would. I will keep going until the doctors tell me that I can’t go on any more. And the money will have to be found somewhere.”
None of this is a surprise to Helen Browne, the founder of the National Infertility Support and Information Group. Debt is a regular feature of phonecalls to the group’s helpline. With one cycle of IVF costing around €5,000, and fertility drugs costing another couple of thousand on top of that, many couples find themselves with some difficult financial decisions to make.
“Some couples extend their mortgage, some get rid of the car. Some get help from their families, and I have heard of people who have cashed in an insurance policy. But, after all, people take out loans to go to college. Why not to have a baby?”
Indeed, Helen did exactly that herself. She and her husband completed several rounds of IVF, and found assorted ways to foot the bills. “We sold a car, cashed in an insurance policy and borrowed — but we could still pay our mortgage and eat. You sacrifice some things and I was happy to do so.”
The lengths to which women will go to realise their goal of getting pregnant can prove problematic for the clinics treating the couples, top UK fertility doctor Professor Sammy Lee acknowledged recently.
“The quest to have children can become a vortex that gets faster and faster and sucks people in,” he says.
“Women will sell everything and anything to have the treatment if they are short of funds. They will risk their lives, there’s no doubt about it.”
Lee says he has even treated women who had risked their own well-being by delaying chemotherapy in order to complete IVF.
The health risks also play on Siobhan Tobin’s mind. While recent studies suggest fertility treatments are unlikely to lead to an increased risk of cancer, not all are convinced. Before she died in 2003, aged 41, from breast cancer, Sarah Parkinson, wife of TV comic Paul Merton, blamed her illness on IVF.
“I know that taking hormones increases the risk of cancer,” says Siobhan. “And because of the drugs I’m taking I also have to take aspirin every day to reduce the risk of thrombosis. But the surgery I’ve had won’t work unless I take the hormones. I don’t think about the risks, because I want this pregnancy so badly. I think of it like this: I don’t drink or smoke — so I am probably healthier than the average person this age. And I know that pregnancy is a risky business anyway.”
For Siobhan and Thomas, the whole experience has brought them closer together, but there’s no denying that it’s been a strain.
“This is the first problem I’ve had that Thomas has not been able to fix,” says Siobhan. “Our relationship is very much like that: if there is something wrong he fixes it. He can’t fix this. He finds that very hard, and it is for me too. I am a woman that can’t have a baby — and that very fact feels wrong.”
No matter how distressing it is, Professor Lee suggests that clinics should be more willing to tell couples when ‘enough is enough’ — financially, physically, and mentally.
“It is hard for couples to accept that they need to stop treatment”, says Joan Hamilton, head counsellor at the Rotunda’s HARI unit. Rituals, like lighting a candle or writing a letter to an unborn child, can help.
“We get couples to focus on who they are outside of the desire to have children — are they going to have other hobbies or focus on other things, like work for instance. We help them to learn to go on to the next phase.”
In the end, after several unsuccessful attempts, Helen Browne and her husband gave up. “It was very difficult to stop,” she admits, “but we were exhausted, both physically and financially.”
But for the Tobins, their fight continues.
“If I get to that stage when the doctors tell me they can’t do any more, I will be able to accept it,” says Siobhan.
“But only when I know I have done everything humanly possible to conceive. And then I will have to accept that this was not meant to be.”
Source: Irish Independent
10.25.09
The cartoon that made me cry
I went to see Pixar’s latest movie UP tonight and it really is as good as all the reviews have said. The film follows septuagenarian Carl, played beautifully by Ed Asner, who following the death of his beloved wife, one day decides to literally take off to find adventure, by tying thousands of balloons to his house and lifting it into the sky. Inadvertently recruiting a wilderness scout named Russell, Carl travels to South America to find Paradise Falls, the place he and Ellie had always dreamed of, finding plenty of adventure along the way.
I expected the movie to be funny, but what I didn’t expect was how deeply moved I would be by the very real deep human emotions it portrays. It realistically depicts a life time of love between the main character, Carl, and his beloved wife Ellie, and his loneliness after her loss. It offers us a reflection on the nature of dreams, how easily childhood dreams slip through our fingers as life takes over. But it is a four-minute, dialogue-free montage near the begining of the film that traces the entire relationship between Carl and Ellie, which for me is the most moving and memorable part of the entire movie. Film critic Kenneth Turan called it ”a small gem that will stay with you for a lifetime”. This is intensified by an emotive music score by Michael Giacchino which tugs at the heartstrings throughout the film.
However, for me, one brief scene in this montage was almost too much to bear, and I felt the tears slide down my face while watching it. The young Carl and Ellie are pictured lying on the grass looking up at some clouds and the cloud formations become babies. They smile and each other and the next scene in the montage is of the couple glowing with happiness as they paint the nursery for their new arrival. So far so predictable. I sat there expecting the next scene to be a smiling Carl and Ellie complete with beautiful baby. But, instead, we see Ellie, head in hands, sobbing as she is comforted by a doctor in a stark clinical hospital scene, as Carl looks helplessly on from a distance. While Carl and Ellie go on to live a long life of loving togetherness, they remain childless, and the brilliance of this film, is that my heart ached for two cartoon characters….and ached for those of us who know this heartbreak too.
10.19.09
Egg screening boosts IVF success
Doctors at an annual US fertility meeting heard for the second year running of the merits of a test that screens embryos for genetic faults. So far more than 20 babies have been born using the technique. The UK researchers say they are now able to back the method with “great confidence”. They hope it will eventually be available to all. Currently, it is offered in a few private UK clinics. Doctors believe the £2,000 test, called comparative genomic hybridisation or CGH, will be particularly useful to older women, whose embryos have a greater risk of carrying genetic errors that cause conditions like Down’s syndrome.
The screening checks chromosomes in the developing embryo when it is a few days old, meaning only those embryos with the best chance of success are used in fertility treatment. Dr Dagan Wells from Oxford University, who led the study, described the latest results on 115 women – six times as many as last year – as “astonishing”. The results are particularly impressive as many of the women were on their “last chance” at IVF – they were typically aged 39 with two failed IVF cycles behind them.
In total, 66% of the women fell pregnant after screening – more than double the number (28%) who typically fall pregnant without it. Dr Wells told the American Society of Reproductive Medicine’s annual conference: “We were taken aback by the impact it had on the success rates. “I think it’s at the point now that we can say with great confidence that we are seeing a positive effect of this.” Around 37,00 women undergo IVF every year in the UK and less than one in four of these procedures is successful.
Allan Pacey of the British Fertility Society said: “Embryology is really crying out for something like this. “We really haven’t moved on from the science of just looking down the microscope and seeing if an embryo looks good on the basis of some rather loose criteria.”
Susan Seenan, from Infertility Network UK, said: “We welcome all new research which may ultimately improve the success rates of IVF for patients. “Although this is still in very early stages, it could be of great benefit to older women whose chances of success with IVF treatment is lower and it is also welcome given the move towards single embryo transfer in the UK and the lack of NHS funding which often, unfairly, means that patients are being denied access to the three cycles which the NICE guidance recommended in 2004. “Improvements in success rates are always important but even more so where patients are receiving only one, or in some cases, no NHS cycles, and we look forward to seeing if further research confirms these results.”
Source: BBC
10.09.09
Another birthday goes by…
So today is my birthday and in the midst of my celebrations, (and there is lots to celebrate I know)…I have crept back online to this blog…. to allow myself a few tears. This is the only place I can safely let them fall….
Those of you who have watched another birthday go by, un-pregnant (is that a word? if not, I’ve just made a new one up!) know how I feel.
Those of you who have passed or are approaching the 40 mark, un-pregnant, certainly know how I feel.
(Shh! I am whispering very quietly here…for today is my 41st birthday and that old biological clock’s tick is deafening)
When I got pregant earlier this year, I breathed a sigh of relief that I had pulled it off before this birthday. I was already looking forward my birthday- the last one before baby came on the scene I thought. It would be the best birthday with the best birthday gift ever. But instead, I am un-pregnant and feel like I am in free-fall watching those reproductive years hurtle on by.
Ok, time to wipe those tears, and paint back on my smile and go and celebrate my birthday now…thanks for listening – I knew you’d understand x
10.03.09
Would you take a pill to erase bad memories?
Eternal Sunshine Of the Spotless Mind
This was the question I pondered today as I read about a drug which has been developed to erase painful memories. I can remember in the depths of my despair over my miscarriage actually saying to my husband, I wish there was something I could take right now to block out this pain I am feeling. At various times in my life when the pain of some trauma has threatened to overwhelm me, I have had that same thought.
But think about it for a moment – isn’t our pain and suffering part of what makes us human? I know it is part of what makes me empathetic to the pain of others and willing to listen and help however I can. Without experiencing my own pain, I woul never be able to do that for others – how could I?
While undoubtedly it would be of benefit to those who suffer severe post traumatic stress and recurrent bad memories which prevent some from moving on with their lives, there are also serious ethical issues to be considered.
Dr Daniel Sokol, a lecturer in medical ethics at St George’s, University of London, said: ‘Removing bad memories is not like removing a wart or a mole. It will change our personal identity since who we are is linked to our memories.” While Dr Sokol concedes that iIt may perhaps be beneficial in some cases”, he also believes ”we must reflect on the knock-on effects that this will have on individuals, society and our sense of humanity.’
If you have seen the 2004 film Eternal Sunshine of the Spotless Mind, which starred Kate Winslet and Jim Carrey, you will have seen the fictional characters use a technique to erase memories of each other when their relationship turned sour. My husband, the scientist (!) loved it , but it just struck me as profoundly sad.
So, what do you think? Are our bad memories part of who we are? Do they serve a purpose in our lives and those of humanity? Let me know what you think.
09.29.09
Infertility: the last great taboo
I was reading the Irish Times today and in the health supplement this headline stood out: “Infertility:the last great taboo”.
Leaving aside the fact that a lot of things are supposedly the last great taboo, there is certainly a lot of truth to the taboo aspect. We just don’t talk about it freely in society. Because it is such an emotive subject, many couples find it difficult to discuss what one writer has called ‘the baby-shaped hole in their lives’.
Without a doubt it is the last great taboo, says Prof Robert Harrison. “No one speaks of it. Maybe a woman will talk to a close friend if she’s worried. But it is such a private issue. It’s one even close friends won’t ask about. It goes right to the heart, I suppose, of who we are as adults and why we get together.”
To be infertile gives rise to feelings of failure, of sexual dysfunction. Author Martina Devlin, who has written of her own experiences of infertility and unsuccessful attempts at treatment, said on the issue last week: “It leaves you with a big R’ stamped on you, for rejection.”
Speaking at the publication of two reports by the Women’s Health Council (WHC) on issues surrounding infertility, Devlin spoke of the mourning couples did “behind a wall of silence”.
“There is so much grief and exclusion and disenfranchisement.”
Since she wrote about her infertility some years ago she is still regularly approached “mainly by women”, she said. “They look happy and glossy and as if they have everything they want in life, and they just want to talk to someone about the baby-shaped hole in their lives.”
It was a testament to how hidden and unspoken an issue infertility was that people were willing to talk to a stranger about such a personal issue, she said.
“Society in general fails to comprehend what it’s like to be childless. People feel it’s tactless to say anything to people they suspect may be struggling with infertility. People stay silent.”
It’s not surprising then that a couple, worried they can’t get pregnant, feel utterly ill-equipped to know where to start, what treatment to seek, how long it will take, the financial and emotional toll it will exact and, indeed whether they even should seek treatment at all.
Infertility affects one in six Irish couples. It was defined by the World Health Organisation in 2001 as “failure to conceive after at least one year of unprotected intercourse”.
Studies indicate 80 per cent of couples having regular intercourse will conceive within a year and 70 per cent will have a baby.
Factors such as age and health will play a role and older couples should probably not wait as long as a year before seeking help.
Harrison, obstetrician, gynaecologist and founder of the Human Assisted Reproduction unit Ireland (Hari) at the Rotunda Hospital, Dublin, has written a book The Smart Guide to Infertility , to help couples.
Now retired from Hari, he says there is a particular pressure in a Catholic, family-oriented culture such as Ireland’s, to have children.
“There is pressure here and in Arab cultures. Children are seen as the natural next step after a couple have got together and stayed together for a number of years.”
The only published survey of couples affected by infertility in this country, a 2005 study of 129 such couples by the National Infertility Support and Information Group (NSIG), found 87 per cent of them felt under pressure to have children.
It also found 63 per cent felt unable to discuss their infertility with family and 58 per cent were unable to discuss it with any friend, pointing to the isolation many couples feel.
Such findings underline, says Harrison, how important both counselling and accurate information are for any couple considering fertility treatment, given the lack of any in general circulation.
“Any couple’s first port of call should be their GP and they should let the GP know in advance what the consultation is about. These consultations take time.”
In the Hari unit, he says, there is great emphasis on counselling at the beginning and throughout the whole process. The fact that couples feel under social pressure to have children is an important issue, he says.
“The counsellor will work out whether the couple is ready or suitable for treatment, and indeed for children.
“Infertility is a couple’s problem. My book stresses that. It is so important. It is not a woman’s issue or a man’s issue, and both in the couple must be dedicated to wanting to have a child.”
He says the journey of treatment can be so long and stressful that couples can only hope to get through it if they are well prepared for – and prepared to – go through it.
Though many will associate fertility treatment with in vitro fertilisation (IVF), the book is an encyclopedic testament to the fact there is much more to it.
Harrison says IVF is likely to be the last course embarked on. There will be investigations of both the man and woman and the answer may lie in simply taking medications to stimulate ovulation in the woman, or sperm production in the man. Tubes may simply need to be unblocked.
“However, answers are not always clear cut and responses to therapy may be unpredictable and disappointing. No guarantees may be given,” he says.
A fact many couples seeking help must face is that infertility is not always “fixable”.
“It is a sad fact that even with today’s advances one in 20 will be consigned to a meaningless non-diagnosis of unexplained infertility.”
Just one in three couples who embark on IVF will be successful, he points out, and the odds decrease as the woman in particular gets older.
An area often forgotten is how difficult it can be for some couples to decide not to continue with treatment.
“You go in with such high hopes and if after three cycles of IVF and still there’s no baby, some couples might want to try another clinic or another treatment. It must be so difficult. I almost feel it’s like cancer treatment at that point.
“You have to weigh up the costs in terms of money, time and psychological toll, as against the quality of life issue.
“There is a quality of life to be had out there without children. I know that is easy for me to say who has children, but to find you are continually banging your head off a brick wall, without success, it must be soul-destroying.
“I think help is so important for couples in that position. It can become a millstone around your neck and people can isolate themselves, avoiding friends who have children.
“If treatment is unsuccessful you have to learn to accept and live with it. Losing the hope of a baby is like losing a loved one.
“The pain never fully goes away, but you take it on as part of who you are.”
Successful couples also need counselling. Pregnancies as a result of fertility treatment tend to be much more stressful he says, as the couple are more nervous about such issues as miscarriage and other problems.
Asked about the absence of legislation regulating the 10 fertility clinics in the State, he says it is “appalling” that the 40 recommendations made in 2005 by the Commission on Assisted Reproduction have not been acted upon.
Ireland is one of three EU states with no regulation of infertility services. The others are Poland and Romania. The only guidance available to clinicians are the Medical Council’s ethical guidelines, published in 2004.
He understands the Department of Health is drawing up guidelines but not legislation. The obstacle holding things up, he believes, is an awaited Supreme Court judgment on the fate of frozen embryos. “I think they really need to grasp the nettle and make a decision.”
Devlin, in her remarks during the week, spoke of her frustration at delays in legislation.
“It’s too important to leave it to individual clinics to self-regulate. There is a lot of talk about the protection of embryos. Well, the adult human beings need protection too.
“Infertile people already feel second-rate, feel substandard. Don’t let society institutionalise this. Don’t let’s continue to look the other way, in silence.”
09.27.09
IVF: three misses and you’re out!
So screamed the headline on the front page of today’s Sunday Times. Not having any personal experience of IVF I cannot comment on this article, so I would love to get your opinions on it.
The basic tenet of the article is that the Women’s Health Council (WHC) of Ireland has said that infertile Irish couples should not be allowed an unlimited number of attempts at in-vitro fertilisation (IVF) because it is rarely effective after the third cycle and takes a huge toll on their mental and physical health.
Geraldine Luddy, the WHC director, said: “It’s a sad situation. Some people who are infertile would go to any lengths. Therefore it’s important that they have a way out of these treatments and that there is support and counselling for them. After a couple of attempts it might be time to let the reproductive technology end of it go.”
Last week the WHC launched two reports on infertility saying it is “a medical and social condition that often causes significant pain and distress to couples and which many people go to great lengths to overcome”.
It said that it was as stressful as divorce and death in the family, yet because of the stigma and shame attached to infertility it is the “last taboo” in Irish society.
At present fertility clinics are unregulated in Ireland, despite a report five years ago recommending that an authority be set up. As a result there is no limit to the number of times a couple can undergo IVF. Clinics do not have to report success rates, making it difficult for couples to choose where their best chances lie.
So what do you think? Is it time we regulated fertility clinics here in Ireland? Should couples themselves determine how many attempts at IVF they wish to try or are they just been offered false hope and a drained bank account after the third attempt? I would love to hear your views.
09.25.09
On dreams….
I have written about the disturbing dreams that have been plaguing my sleep recently and this morning I came across this quote.
A dream which is not interpreted is like a letter which is not read. ~ The Talmud
Looks like I need to do some more delving into the subconcious and deal with whatever is lurking there that may be playing a role in my fertility problems. What do you think?
Related Post: What’s in a dream?
09.24.09
Criticism over delay in licensing infertility clinics
A STATE agency promoting women’s health has criticised the delay in licensing infertility clinics that have been providing services in Ireland for over 20 years.
The Women’s Health Council (WHC) said Ireland, Romania and Poland were the only countries in Europe not to have legislation for clinics offering assisted reproductive technologies.
Infertility affects one in six couples in Ireland and the WHC said demand for infertility treatments was likely to increase with couples delaying parenthood to pursue career and financial security and as obesity and sexually transmitted infection rates increase.
Latest figures show that the number of babies born as a result of in vitro fertilisation (IVF) has more than doubled from 135 to 301 in 2005.
The WHC, who launched two reports on infertility and treatments yesterday, warned that the cost of one IVF cycle was €7,000, with fertility drugs costing up to €3,000.
Director Geraldine Luddy said the Department of Health was drafting guidelines for regulations and the expected judgment in the R v R frozen embryo case would also be taken into account when drafting legislation.
Ms Luddy said it was presently impossible for couples to compare the success of clinics as data was collected in different ways. “They will tell you the successful pregnancies they have, but not the births,” she said.
Less than a quarter of couples who undergo treatment will have a baby, with success depending on patient age, weight, pregnancy history and IVF procedures.
The WHC believes that regulation would curb any commercialisation of Ireland’s 10 privately run infertility clinics and enable the implementation of best practice guidelines.
Regulating the clinics would also support the gathering and publication of statistics in terms of services provided and outcomes.
It also pointed out that the unresolved legal question of the embryo had practical repercussions for service providers and might also negatively affect patients’ emotional and psychological wellbeing.
The WHC said there was no legislation to cover egg and sperm donations that was being dealt with on a case by case basis in the courts.
Director of the Merrion Fertility Clinic in Dublin, Dr Mary Wingfield, said recent figures put the number of babies born every year in Ireland as a result of IVF at around 3,000.
She pointed out that there was no upper age limit on infertility treatments and said that was a huge problem. “It is very difficult to discuss because we do not want to feel we are blaming women,” she said.
Dr Wingfield said a woman’s fertility began to decline at age 35 and fell dramatically after the age of 38.
Source: This story appeared in the printed version of the Irish Examiner Thursday, September 24, 2009
09.23.09
Some pregnancy fears allayed
I am still having terrible nightmares and each morning as I recount them to my long suffering husband, I pester him for an interpretation. His interpretation invariably ends with “and deep down you are afraid to get pregnant!”
Now I don’t know if there is a psychological component to getting pregnant. Can you block conception in some psychological way? However, what I do know is that my fears are based on a fear of a cancer recurrence.
I have mentioned here before that the effect of chemotherapy on my fertility was the most devastating aspect of being diagnosed with breast cancer. For some women, the result is permanent infertility, others, like me, have complicated fertility issues post treatment. One of my chemo buddys did get pregnant post treatment with the help of IVF, but tragically developed a recurrence while pregnant. This brings up a lot of fears for me. If a miracle were to happen and I conceived again, would this increase my own chances of recurrence? There is not enough statistical evidence as yet to answer this question satisfactorily. However, the latest research does show that pregnant women who develop breast cancer do not have worse odds of death or of cancer returning than other young breast cancer patients.
The study is one of the largest to look at whether breast cancer hits pregnant and recently pregnant women harder than other women. It contradicts some smaller, earlier studies that suggested maternity made things worse.
“If we can get them early, we can treat them aggressively and have good and promising outcomes for both woman and child,” said the study’s lead author, Dr. Beth Beadle of the University of Texas M.D. Anderson Cancer Center.
Frightening for any woman, a breast cancer diagnosis is particularly terrifying for a pregnant woman. It presents complicated decisions about how to treat the mother and not harm the fetus.
I realise that this post is not relevant to the majority of you, but if anyone is interested in reading more on this study, please click here.
I am hoping that this latest research will go someway towards calming my deep seated fears around pregnancy and the nightmares might lessen.
