Being a mother is something I always presumed I would be. As a child, I played games based on families; tea parties involving mummies and daddies, brothers and sisters with my dolls and with my friends. I’ve never been an overtly motherly type: unless babies have been part of my immediate family or very close friends, I’ve never been a cooer or a clucker over someone else’s newborn. Instead, I guess you could say that I’ve just been quietly maternal since adulthood.
When I met my husband (know hereafter as H) when I was 27, I knew very quickly that he was the man I wanted to spend the rest of my life with, and who I wanted to be the father of my children. It hit me like a thunderbolt really! When we got married after three years of being together, we were looking forward to trying for a family after about 9 months or so of being newly-weds. We knew that I carried the gene for Cystic Fibrosis: this had been confirmed when I was in my teens, after two cousins of mine had been diagnosed with the disease and genetic testing had been offered to the rest of the family. We knew that we needed to get H tested for the mutation, given that 1 in 20 people in the UK are carriers of the disease. However, the spirit in which we requested this test was very much along the lines of making sure boxes were ticked and everything was ready to go before we made our family.
July 2007
So, when we received the terrible news that H also carried the CF gene, we were absolutely devastated. It meant that we had a 25% chance that each child of ours would have the CF disease, a 50% chance that the child would be a carrier, like us, and a 25% chance that the child would neither be a carrier nor a CF sufferer. Through our genetic counsellor, we were presented with these stark options:
1) Continue to try to get pregnant naturally and leave things to nature, which includes the acceptance of the possibility of having a CF child.
2) Continue to try to get pregnant naturally, and opt for a CVS test antenatally at 11 weeks gestation, allowing us to terminate a pregnancy if we wished.
3) Go for a specialist type of IVF treatment, PGD IVF, whereby only embryos that are free of the CF disease would be transferred back into the womb.
4) Remain childless
5) Pursue adoption
Not a great set of choices. With lots of tears and heartache, we took some time to talk things through, and, although none of these options seemed any easier than the others, we went with our gut instinct that we would try naturally and then opt for a CVS test if we got pregnant. We did not feel we could bring a child into the world, knowing the suffering he/she would go through. I admit that selfish reasons also formed part of our decision.
August - November 2007
We thought the best thing to do would be to start trying immediately, given that the road ahead might not be plain sailing. So in August 2007, we threw away the condoms (I had come off the pill earlier that year to resume my natural cycles), and with trepidation and excitement, began to try to conceive. We were on holiday during part of that first month. It was so strange thinking that each time we had sex it could change our lives. You spend so long trying not to get pregnant, that it almost feels taboo when you actually start to try. Towards the end of the holiday, I was imagining all sorts of symptoms: stomach cramps, nausea, strange dips in temperature (I was temperature charting religiously); so much so that I was quietly convinced there was a baby implanting inside me. When I got my period the day we got home, I was disappointed, but still excited for the next cycle. I knew all the statistics – it could take a few months.
Over the next two months, the same build up of anxiety and excitement occurred as I neared the end of my cycle, but this time, I started to notice some irregular bleeding. At first I was convinced this was the heralded ‘implantation spotting’ and I secretly started to plan the nursery in my head. But all of the time I was frightened. If this is really it, then how am I going to deal with carrying our baby for 11 weeks, then face the anxiety of a CVS test and maybe a termination if the baby is CF? I wasn’t sure how I would face this, but we decided to take one step at a time, and not worry about things that we may not ever have to face anyway.
My emotions were not very well controlled during the first four months of trying, I admit. I would veer from being happily optimistic and relaxed during the first half of my cycle, to being obsessive, anxious and impatient during the dreaded ‘two week wait’ for my period. I also discovered that I seemed to have a rather short luteal phase of 10-11 days, which, with the irregular spotting, made me anxious that something might not be quite right with me. But we kept going. H did an at-home sperm test, and the results came back as ok, but the kit only tested concentration of sperm and not motility or morphology. We were reasonably satisfied that things seemed ok in his department!
At the end of the fourth month, I was convinced that we had done it. I became really nauseous, my breasts felt heavier and tender, and I had some strange spotting. My period was two days late and I began to plan how I would break the amazing news to H. I took some tests: they were negative, but I thought that perhaps it was a little early to get a positive result. Then my period arrived, and the bottom dropped out of my world. I fell to pieces, crying and became very dejected with the whole situation.
December 2007 - March 2008
So, I booked an appointment with my doctor to discuss things. I took my temperature charts with me and explained our situation to my GP. She seemed rather bemused that we had only been trying for four months, and told me that I should ‘relax and then it would happen’ (this is an irritating thing to say to someone who is trying to conceive, and a completely awful thing to say to someone with infertility), whilst also regaling me with tales of her patients who had given up all hope of a pregnancy and started adoption proceedings, only to find out that they had conceived after all. This was unhelpful to me – after all, what difference does someone else’s story make to us? It does not mean that there will be no problems with possibility of the conception of our child. I was a little disgruntled. But she did take on board the fact that, given our CF genes, our circumstances were somewhat different, and that I was more than a little anxious to conceive sooner rather than later. She agreed to send me for some blood work, to test my progesterone levels, my FSH, my Rubella immunity and my thyroid levels.
I got my blood tests back. All seemed fine. My progesterone levels, although not terribly high, showed that I had ovulated that month and my FSH came back at 6, which I read showed average to good egg reserves. My Rubella immunity was in place and my thyroid levels were normal.
H was worried about me at this stage, I think. We agreed that I would give the temperature charts a rest: after all, we had ascertained that I was ovulating on more or less the same day each month, and that my cycles seemed regular. So we decided to go for the approach that most of my friends and family were advising, namely ‘You’re trying too hard, perhaps. Don’t worry, just relax and it will happen!’ Well-meaning comments, I know, but incredibly frustrating to hear time after time. Just how do you relax when you’re trying so hard for a much-wanted child with the possibility of both fertility problems and antenatal testing ahead of you? Part of the bid to become less stressed about the whole thing involved reflexology sessions for me. I found a lovely lady who specialised in reflexology and fertility issues, and started seeing her every fornight. I can’t say that it made any difference to our fertility, but it is certainly relaxing to take some time out to have your feet massaged!
We continued trying for four more months, this time using the ‘relax and it will happen’ approach. This took us to the end of March. We had agreed that if nothing had happened by that time, then H would make an appointment to have a proper sperm test. He arranged this, and the day after we got back from our first wedding anniversary weekend away, he went for the test. Later that week, his doctor gave him the results.
April 2008
This was another terribly bleak day for us as a couple. H phoned me at work with the results, sounding buoyant and relieved. His GP had told him that there was nothing to worry about, that one of his statistics was a little low, but that it shouldn’t make too much difference to our ability to conceive. When H read the statistics to me, alarm bells rang. They sounded abnormally low to me. I confirmed the stats with the data on the World Health Organisation’s website and my fears were confirmed. When I got home that evening, I found him with his head in his hands. He had looked up the results on the web too and had found that his morphology and motility levels were classed as extremely low. The anguish we both felt was crushing. I could see that he felt immasculated and useless, and I felt like I couldn’t comfort him, no matter what I said or did. He could barely look at me for several hours. My poor, poor husband. It broke my heart to see him so devastated.
I was so angry with the world at this point. Why did the GP not advise him correctly? Why were we being thrown severe fertility issues on top of the CF mutation? We’d make great parents – why couldn’t we have our chance? Obviously, at this time, pregnancy and babies appeared absolutely everywhere. From TV adverts, to soaps, to passers-by, at work – everywhere. I found it so hard to deal with. There were people everywhere finding it seemingly easy to have one, two, three, four children, despite not really looking after their health. Why us?
After a week or so of complete dejection and anger, we tried to pull ourselves together and do something positive. I ordered some expensive fertility supplements for H and he agreed that he would cut down sharply on alcohol in a bid to see if he could improve his sperm quality. We decided to try to eat more whole foods and to cook from scratch; we didn’t eat many ready meals anyway, but we decided to cut them out altogether. We also decided that since we were going to need fertility treatment, then we should now change our plan to option 3 – have pre-implantation genetic diagnosis to try to conceive a child.
So we asked to be referred to Guy's and St Thomas hospital in London to commence PGD.
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