Friday 19 January 2018

The crushing pain and heartbreak of being infertile

After seven years of failed IVF, the devastating blow of a miscarriage and with time and money running out, June Shannon and her husband have decided to try once more using eggs from an anonymous donor

June Shannon

A BEAUTIFUL old photograph of my great grandmother as a little girl sits on our mantelpiece – and I love it. In her I see my own lovely mother who passed away 18 months ago. My mother and my great grandmother shared the same smile and sometimes I see that same smile in mine. In a way, seeing past generations staring back at me from the bathroom mirror is a comfort; seeing loved ones' faces in mine, a precious reminder of those that have gone before.

I also see that same enchanting smile in my gorgeous nieces and nephews, four generations removed from their great, great grandmother.

However, recently, I have had to come to terms with the fact that I will never see that same wide, beautiful smile in my own children, despite the fact that they have not yet been born.

For the past seven years my husband and I have been living with unexplained infertility. We have had two full rounds of IVF and two cycles using frozen embryos. The first round resulted in a much longed-for positive pregnancy result. Sadly, however, the joy was short lived as I miscarried at nine weeks. The other cycles were unsuccessful.

As a journalist, I have written hundreds and thousands of words but the hardest word I have ever had to write was 'mother'.

I will never forget the form the nurse with the kind smile handed me in the hospital. It was December 2009 and I was being asked to sign a form to indicate my relationship to the tiny foetus I had just miscarried at nine weeks into a much-wanted pregnancy.

June Shannon
June Shannon
June Shannon and husband Tony
June Shannon

Just over two months previously, after four years of trying and our first cycle of IVF, I could hardly believe it when the pregnancy was confirmed by that blue line. In fact, I did about six tests just to be sure. They all said the same thing and I was the happiest woman. But nine weeks later, when I heard the words, "I am so, very sorry there is no heartbeat," I thought for a second mine had stopped too.

When I sat on the hospital bed after the operation, my hand shook as I wrote that word. It was the first time I have ever had to write such a wonderful word to describe myself and it broke my heart.

Now, five years, three more IVF attempts and more than €10,000 later, we have made the decision to give it one more go, this time with donor eggs.

Advances in fertility treatment have meant that there are a lot more options available to couples who, for whatever reason, are struggling to conceive, and one such treatment that is being increasingly used is IVF with donor eggs.

I will be 43 this month and although the option of undergoing IVF again using my own eggs is still open to us, the success rates are very low given my age. However, using eggs donated by a much younger woman, usually between the ages of 21 and 30, significantly increases our chances of success.

Having experienced the crushing disappointment of repeated failed IVF cycles using my eggs, and both time and money rapidly running out, we have made the decision to use donor eggs in the hope that it will give us a much longed-for child of our own. We also know, however, that nothing is guaranteed.

A number of fertility clinics in Ireland now run egg donation programmes in conjunction with clinics abroad in countries including the Czech Republic and Spain. It can be a complex process but, put very simply, a woman who has made the generous decision to donate her eggs will be selected anonymously, loosely based on my physical characteristics. She will then take medication to stimulate her ovaries to produce eggs.

These eggs are then collected under sedation and mixed with my husband's sperm to produce an embryo. At the same time I will take medication to prepare the lining of my womb to accept the embryo.

Some clinics necessitate the couple to travel to undergo the procedure, while others take the sperm from Ireland, introduce it to the egg in the foreign country, and bring the embryo back to Ireland to transfer to the womb of the woman undergoing treatment.

Donors are screened for all major illnesses and health conditions and different countries have different laws surrounding anonymity.

For example, in the UK, since 2005, children born from donated eggs, sperm or embryos have the right to know the identity of the donor at age 18. We are planning to enter into a programme with the Czech Republic where anonymity is maintained.

We didn't make a conscious decision to choose a programme based on the fact that anonymity of the donor is maintained. It just happens that the programme we hope to avail of uses donors from the Czech Republic and the law in that country states that donations are voluntary and anonymous for donors, recipients and any children conceived as a result.

There are lots of questions spinning around in our heads, one of which is, if we are successful, will we tell our child the story of their conception? I think we will. Every child has a right to know where it has come from.

We will start with age appropriate information, telling them from a very young age that they are the result of a very special gift. As they grow and begin to understand more, we will do our best to answer all their questions as honestly as possible, in the hope that if they grow up knowing their story, it won't be such a big issue for them.

But this is all very new to us and we hope to learn more about the best way to discuss these issues with professional help later.

Women who donate eggs are paid expenses to compensate them for the pain and discomfort of undergoing treatment. There are also limits as to the number of times they can donate in their lifetime and the number of families they can contribute to in Ireland.

These women in my opinion are heroines. They don't make the decision to donate lightly and, given the small amounts involved, they certainly don't do it to make money. Without their help, many couples like my husband and I would be consigned to a life without children, something we are not ready to accept. It is too hard.

Some women have made a conscious decision not to have children. That is their choice, it is their right, and I support them in that. In fact, I am secretly jealous of their resolve. To be content in life without conforming to societal pressures to be a mum, just because you are a woman of a certain age, must be hugely liberating.

However, I can imagine that having to explain that choice to those who cannot accept it must be very wearying.

Then there are the women like me who ache every day to be a mother.

It is estimated that one in six couples in Ireland are affected by infertility and my heart goes out to each and every one of them.

Infertility has been ranked as one of the great stressors in life, comparable to divorce or a death in the family.

However, unlike bereavement, where time can help, it's passing can simply intensify the sorrow of infertility.

According to the 2005 Commission on Assisted Human Reproduction, "infertility is a medical and social condition that can cause considerable social, emotional and psychological distress".

The commission continued: "For those who want to have children, infertility can be an extremely traumatic experience, characterised by feelings of guilt, low self-esteem, depression, and sometimes consequent relationship difficulties and sexual dysfunction.

"These psychological effects have been compared to those following bereavement. The process of discovery and comprehension involved in the diagnosis and treatment of infertility can be a very isolating period for the individual or couple. There may be social consequences too, as extended families and local communities share bonds through child rearing from which childless individuals and couples feel isolated."

Isolation is a very good word to explain how those affected by infertility feel every day. Loneliness also works. We have also been to numerous christenings, first, second, third, fourth, fifth and sixth birthday parties.

While we feel privileged to be invited to these wonderfully joyous occasions, they are also always tinged with deep sadness.

I have learned to perfect my "how wonderful face" when women I know tell me they are expecting their second, third and fourth babies.

I ask all the right questions: "when are you due", "how are you feeling?" "Are you going to the Rotunda again?" "Do you know if it is a boy or a girl?"

Then I go home and dissolve into tears, rally against the unfairness of it all and berate myself for not being able to do what it seems like every other woman I know can do, and my heart breaks all over again.

I then immediately feel guilty for being so selfish.

I was and continue to be genuinely delighted when my friends and my sisters announce their pregnancies.

I adore being 'Aunty Juney' to all their gorgeous children and it is a huge privilege to be involved in their lives.

I just wish their wonderful news didn't hurt so much.

I don't think anyone who hasn't been through the heartbreak of infertility can ever truly understand how devastating it is, and continues to be. You are grieving for your future or what you imagined it would be.

And for the record, well meaning as they may be, stories of how a neighbour's wife had two children at the age of 47 after a trip to Lourdes don't help.

Neither does advice to "relax and it will happen."

What does help, however, is a little bit of sensitivity and insight.

If you are friends with a woman like me, all we ask is that you try to understand and be mindful of our grief.

Tell us your wonderful news and exciting plans.

But please don't go into every tiny detail of your pregnancy, your worry that you will put on weight and lose your figure. You have no idea how much we would give for that chance.

Share your genuine worries that all will be well; I am your friend and a good listener.

But please don't show us the scan photos, they hurt way too much, especially to those whose last scan was to confirm a miscarriage.

When we meet for coffee and your new arrivals are now a gorgeous boy of four and a chatty girl of three, tell me about them.

I want to know how they are, what they have been up to, the wonderful things they have said. But please don't spend the precious two hours we have together talking about them and nothing else.

You are a bright, intelligent and funny woman. I want to know how you are, what you have been doing and what you think.

And when you meet me at a children's birthday party, please don't ask me about my two cats in the mistaken belief that I have nothing else to mind, to nurture, to care for. Ask me about my gorgeous nieces and nephews just as I have asked about your lovely family.

I know all the words to Do You Want to Build a Snowman from the film Frozen, and have seen the pride in a three-year-old's face when she reaches the highest point of the playground slide. Indulge me in a 'proud aunty Juney' moment.

It is important to acknowledge that men feel the intense anguish and heartbreak of infertility just as keenly as women, and apart from the real human cost, couples living with infertility in Ireland also struggle with the huge financial costs of treatment.

Unlike the UK where limited IVF treatment is covered under the NHS, in Ireland it is not covered by the health service. Apart from a number of clinics here that provide subsidised treatment to a select number of couples, there is no widespread financial support.

The cost of fertility drugs are covered under the Drugs Payment Scheme and couples can claim tax relief on the cost of IVF treatment. However, you have to first be able to afford the treatment before claiming the relief.

Infertility is a medical condition and its symptoms can include devastating grief and psychological distress. Yet, in order to get any hope of treatment here, you have to be able to afford it, and that in my opinion is unacceptable.

One round of IVF costs approximately €4,000, and many couples must undergo a number of cycles before they are successful. Our next step using donor eggs will cost us approximately €8,000.

These costs are hugely prohibitive for a lot of couples and the thought that only those that can afford to be parents in Ireland are given that opportunity is, in my mind, inherently wrong.

We joked in the past that, if successful, our much longed for new arrival will be dressed in baby grows emblazoned with the words "sponsored by the credit union".

This time it is thanks to money my lovely mum left me when she died that we can even consider our next step. As someone who held my hand through periods of intense grief after our past failed attempts, I know mum would be thrilled that her final gift to me has given us this chance.

We hope to re-embark on the IVF rollercoaster using donated eggs later this summer.

Clinics rightly insist that couples undergo counselling before embarking on egg donation, as there is a lot to come to terms with. I have to accept that, if successful, our baby will not have any of my biological traits.

It won't share that same wide smile I see in old photographs. However, it will share my husband's traits and, for the record, he has the most beautiful blue eyes.

Whatever the outcome, we will never forget the incredibly generous, life-giving gift given to us by a woman we will never meet. If we are blessed with a child, the one thing we can give her in return is our promise that it will be the most longed for, most precious addition to our small family; that, and our eternal gratitude.

The possibility that this time too it could fail is never far from our minds, and we wonder if we will have the strength to go on if faced by more crushing disappointment.

However, the thoughts that maybe, just maybe, this time it might work are also there, willing us on.

THE NATIONAL INFERTILITY SUPPORT AND INFORMATION GROUP ARE AT WWW.NISIG.COM

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