Wednesday, September 30, 2009

Becoming Infertile

Louise with baby Isaac














(Are some things too personal to share with the general public, or is the responsibility of a blogger to sometimes say it like it is? Readers will need to decide but I confess that I am very nervous as I press the “publish” button. If this article is well received, then I may be encouraged to publish further intimate and socially important articles.)

I have seen in tonight’s paper that the nation’s Fertility Units are to be graded, based on their success rates of helping infertile people to have babies.

I imagine the clinics will be dead against this proposal, but I think it is a brilliant idea. I would however want to add some extra criteria – their willingness to engage with LGBT couples for instance, or single women, or couples living apart, their bedside manner, their understanding of the emotional health of their patients and the level of moral support they offer.

My experience of Fertility Clinics has been both distressing and traumatic and during my time as a patient, I would have really appreciated the opportunity to have contributed to their ratings. For me, GPs have been fantastic in their personal support whereas fertility clinics have left very much to be desired.

Colin and I were trying for a baby for quite a long time and because I was already in my late 30s we decided to seek medical help. I went to see my local GP who was absolutely great and extremely supportive. He took a few basic tests from us and immediately agreed to refer us to the Halifax Fertility Clinic attached to Calderdale Royal Hospital. We had an appointment for a week day and Colin was able to get special medical time from work to come over to West Yorkshire. We turned up at the clinic and met the receptionist who took us into a room to take some basic details before we went in to see the consultant. As soon as she learnt that we were not yet living together, she said they would not be able to treat us and we must leave.

We were obviously shocked and distraught, and challenged her hard. We were, we said, a genuine couple, and why should it matter to her whether we were already living together or not? She said “We do not make babies, we make families” and showed us the door. In deep shock we tried every argument we could, but she would not be moved. She would not even let us see the consultant to see if we could change his mind. I recall sitting in the car in the car park above Peace Hall in Halifax with Colin for at least an hour while I sobbed and wailed and he stoically held my hand while I ranted and cried and hit the steering wheel. It was a long time before I had myself sufficiently together to drive us back home.

I went back to the GP who was of course appalled. He simply could not believe what he was hearing. He said he would never have referred us there if he had known, or would have written a much stronger letter of recommendation to support us. He said there was nothing in their listings as local fertility providers that suggested this apartheid was the case. He offered all the help he could. He sent me off, retrospectively, to Huddersfield Royal who carried out various further tests and seemed to offer us a way forward (of an encouraging “it all seems broadly okay so keep on trying” nature) but no specific treatment.

It was probably about six months later that I moved in with Colin in Liverpool and after heart-searching discussions, we nervously registered, via Colin’s GP with the Women’s Hospital in Liverpool. Again the GP was keen to support us and hoped that our horror story would not be repeated. We were delighted to be accepted for treatment. The fact that we were not married did not seem to concern the hospital and we had some quite positive appointments. A few more tests resulted in a recommendation that Colin was really extremely fertile whereas I was clearly showing my age (by then 40) and they decided to recommend us for a course of treatment that would encourage my ovulation. This was really our last recourse. I took the tablets for at least a year, which was longer than they normally allow for (6 months), and we did all the temperature taking and other stuff, which I will respectfully gloss over, that they recommend. But alas, no pregnancy was forthcoming.

At our final appointment the consultant shook his head, said there was nothing more he could do, I had taken the tablets for as long as medical recommendations would suggest, the potential side effects for carrying on being too great. And then he said the immortal words, that it was in any case my fault for being overweight. “Fat women don’t get pregnant easily” he said, “You need to lose several stone, but frankly your blood tests show that it is too late for you now anyway, you are too old.” Reeling with shock, I asked why he had not told us before that my weight was a problem. He tried to suggest that he had but we knew differently, we would have done anything to have a baby, and had he suggested this was an issue before, I would have been on a diet long since. I pushed him on this, if my weight was an issue, why were we only hearing about this as we were dismissed? But he would not elucidate.

We asked him what our chances were, if I were to go on a crash diet and lose lots of weight and he said that even then and even if we were prepared to pay (which by now, at the age of 41, I would have been obliged to do, NHS help ending at 39), we would fail. He said that we might pay upwards of £10k for IVF and it would still fail as I was not producing the right amount of hormones to carry a child due to my age and my hormonal levels. He gave us about a 1 in 10 chance, even if I was much slimmer and we paid over the odds.

He was cavalier with our feelings, he shrugged his shoulders, he put our failures back on to ourselves, he offered no counselling or support, he had moved from keen and enthusiastic to completely dismissive.

So, to coin a phrase, it was as clear a case of “collapse of stout party” that you are ever likely to see.

I don’t really know how we got through those next few months, it was horrific. My younger friends and family seemed to be falling pregnant with ease, all around us. I had to grit my teeth in order to congratulate them, I cried buckets of tears every time I saw a pregnant woman, and buying gifts for the new born of our friends and relatives rubbed salt deeply into the wound.

Yes, we got over it, eventually, and the hormonal drive to get pregnant, to have a baby, did diminish for me, as my hormone levels changed in the way the consultant had suggested they would. I don’t know whether Colin has ever got over it though, you would have to ask him, although I suggest strongly that you don’t.

But what made it so hard for us was not just that we failed in our endeavours to have a baby and become a family, but that we were treated so poorly and with such disregard for our mental health or well-being by these baby doctors who see themselves only in terms of how many new babies they can bring into the world. In both clinics there were photo walls full of babies born to happy parents, all created thanks to the marvels of Mr X and Mr Y. There is no room on a Fertility Clinic’s photo montage for an infertile woman or couple, there is no place at the table for those who do not conceive.

Colin and I won’t feature in the grading of fertility clinics for the new tables, our experience is a few years out of date now, but I wish that such things were around when we were trying so hard, and that our experiences of the most humiliating treatment at the hands of these baby doctors were factored into their ratings. Maybe they would have been kinder, more generous, more informative, more thoughtful, and a bit less obsessed on the numbers game, if they had thought that big brother was watching.

I have not discussed this entry with Colin and he may ask me to edit it, in which case, this version may not stay up for long.

I love my nephews, my niece, my special (not God) children, and the wonderful children of my best friends. My own desires have passed with the changes in my hormones. These days I can genuinely welcome the birth of a new baby with joy and not a speck of envy, and I love going shopping in Mothercare for baby clothes for these wonderful new additions to our lives. But we were seriously short-changed and I hope that the new plans to rate clinics will make it much easier for the next couple (or single person) that comes along. Never again!

12 comments:

Anonymous said...

Very brave of you to discuss such a personal and emotional issue so openly. People can only respect you for this post!

Laura Gilmore said...

Louise,

Politics may divide us - but as a woman I am in tears reading this brave post.

I really do admire you for highlighting these issues - I can't begin to imagine what you and your partner have been through with this issue.

Best wishes,

Laura.

scouseboy said...

Louise, my heart goes out to you. The clinic in Yorkshire treated you most heartlessly, and the consultant you saw at Liverpool womens needs to develop some bedside manner and also learn some tact.
You were very brave to post this, and I am glad you have been able to move on in some way, however hard for you that might have been.

Polo said...

Louise, such a heart breaking yet inspiring story you have shared with us.
I hope writing it down has gotten some of the ghosts out of your memories.
Stay strong.

Anonymous said...

I have 2 children of my own, now grown. My son cannot ever have children of his own without help from the medical profession. I truly hope that patient care is greatly improved when he makes a choice to have children. Your story is heartbreaking but I want to thank you for sharing this will us. Your a brave and well respected lady.

ScouseHouse said...

Wow! Louise that was a very brave and powerful post and a passionate argument why our medical services need to remember that they work with human beings.

I've worked in Quangos and its very easy to only talk about your successes because you live or die by them - but it's very important that we build in ways to let them learn from their mistakes. And there is clearly a lot they could learn from the way you've been treated.

I can't imagine what you've been through but I know there are lots of children who feel your love and we are all better off for your honesty.

best wishes darling.

John Coyne said...

A brave and wise decision to publish, I think.

Louise Baldock said...

Thanks everyone for your kind and warm comments, and to those who emailed me, sent texts, or stopped me in the street.

I am grateful for your support.

I think maybe if I was writing this again I would concentrate a bit more on the policy point I was trying to make and a bit less on the emotional impact, because I think some of my message was lost in the miserable nature of the experience I related.

I was trying to make the point that Fertility units and consultants are really only interested in success stories, success stories that fit their predefined agendas. Once they realise that you are not going to produce a baby for their photo wall, they quickly lose interest and patience in you.

Nobody offered us support services or counselling, once we were not going to be parents then we were essentially discharged and dismissed.

Yet couples facing a childless future can be bereft, it can ruin relationships, it can lead to blame and counter-blame, it can lead to terrible things like baby-snatching even.

I was making the point, albeit clumsily, that if we are to rate fertility units on their abilities to produce life births, we need to have a raft of other measures that they are also graded on, for those who are not successful or are still trying. These might include bed-side manner, support services, therapy etc.

A clinic that took failure as importantly as it took success would rate very highly in any tables I was to produce.

Best wishes, Louise

Anonymous said...

Louise, this must of been really difficult for you and your partner.

How do you feel about Gay couples going for fertillity treament..

I am close friends with a gay couple who went through various treatments.. They did not recieve any help from the NHS either, they were saving to get IVF from the Womens Hospital in Liverpool.. Sadly when they had found a match to continue with the treatment one of the couple left to start a relationship with another woman...........................!!

Louise Baldock said...

Thanks for that question. The situation has changed since your friends asked for help, assuming they are both women, rather than men, about whom I know nothing.

Gay women may now access fertility treatment on the NHS thanks to our Labour government, so the experience of your friends, which was very regrettable, would not be repeated today.

It is a sad but true fact that many couples find that their relationships do not survive infertility and I am not remotely surprised that your friends' relationship was damaged.

Progress is slow and with very small steps but I do believe we are slowly moving in the right direction. Thanks for raising this.

Anonymous said...

Hi,

I realise that you posted this article a while ago so, you may not read this comment but, I was deeply moved by this. I will admit it has left me slightly concerned about how I will be treated as I am about to start IVF treatment through the NHS.

Louise Baldock said...

Good luck with it! Do come back and let me know how you get on. And remember - if you get a poor service, complain to your MP!
Best wishes, Louise