As a long term fertility patient, I thought I knew everything about infertility after ten years and fifteen failed attempts at Intra Uterine Insemination (IUI), In Vitro Fertilisation (IVF), Intra Cytoplasmic Sperm Injection (ICSI) and Frozen Embryo Transfer. I have used mine, my husband’s and just about everyone else in the world’s gametes and I certainly knew about despair and heartache.
Six weeks of antidepressants later (I said I would try anything and that is all that was left by then), I had another go and amazingly it worked. Our daughter arrived in the late autumn of 1998. Just the one, secretly though I had hoped for twins – even triplets! What a blessing that would have been – a ready made family – I would never have to go through IVF again! But one child was still a miracle and I was happy.
She arrived, full term, howling – a good start. But once she opened her eyes, we could see something wasn’t quite right – they were all over the place – panic!
All through the pregnancy everyone had said, “Is it a boy or girl?” and of course we said it didn’t matter, “as long as it was healthy.” Thankfully, apart from her eyes, she seemed fine.
We left the maternity hospital and went straight to the eye hospital – just as we thought we were done with all of that hospital stuff it was starting again. Initially, the prognosis was uncertain but it was clear something was wrong. Time passed. Our daughter also started to develop problems with her joints and movements. We visited hospitals regularly along with trips up to London (something else we thought we’d finished with) to see specialists. During this time, we struggled desperately to fit in more fertility treatment and, after three more attempts, we were wonderfully lucky and had our little boy.
Eventually our daughter was diagnosed with both Ehlers Danlos Syndrome, which is a manageable but painful joint condition, along with a rare form of Ocular motor palsy and cone dysfunction. This meant that the nerves controlling her eye muscles were not working so she couldn’t properly focus or control where she was looking. Her eyes ‘tick’ like the second hand on a clock, her contrast and colour vision are poor. By the age of six she was registered partially sighted and by the time she was 12 she had lost 90% of her vision.
Of course we love her more than I can say. But our lives have not been the lives we thought we would have and her life is certainly not what she would have wanted for herself. We are constantly under strain with hospital appointments and also in accessing the education she needs. Our son doesn’t always get as much attention as he needs and we often don’t get any time together as a couple. But we cope, and do everything we can to make her life as easy as possible. But it is hard. Sometimes it is very, very hard.
When I first heard about SET I was vehemently against it. Having experienced the mental, physical and financial torture of fertility treatment, I couldn’t for a moment believe that anyone would be mad enough to suggest that someone only has one embryo reimplanted! I wanted all of mine in there – safe, warm, surviving … mine.
I had my 22 embryos put back over the years in twos and threes. I also lost embryos that didn’t survive the thawing process after being frozen. Nothing at that time would have made me agree to only having one embryo reimplanted – I didn’t care remotely about the risk of having a multiple birth – my ‘twins’ would be fine, they wouldn’t be disabled – that only happened to other people and even if they were, it wouldn’t really matter. I was naïve. Desperate, but naïve.
But now that I am bringing up a child with a lifelong disability, I feel differently. Despite being a single birth she is still disabled. I love her with all my heart but I worry about her future and it breaks my heart to see her struggle. But I know that her disability just ‘happened’. To enable her to meet other blind and visually impaired children, several years ago I set up a group in our county for similar families. The group now has 84 families. By the law of averages you would expect one set of twins in a group of 80 or so families. Our group has six sets of twins and one set of triplets! And one or more of each set (and in the case of the triplets all of them) suffer from sight loss as a result of being born prematurely because of being a multiple birth. Over half of these children also have additional needs, including hearing loss, cerebral palsy and autism.
So regardless of whether these children were naturally conceived or conceived through fertility treatment, it is quite clear that the risks associated with multiple births are very, very real. The families struggle with their needs and with the needs of their siblings. All the children are loved and adored but many won’t go on to lead independent adult lives.
When you are suffering from infertility you have a dream – but I doubt for many people that includes bringing up one or more disabled children. So I have changed my mind. One healthy single child at a time should be the dream. All we need now is the funding to make it happen.