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The bumpy road to parenthood The difficulties I experienced conceiving had nothing to do with my disability. The dread, hope and expectation that accompanied the monthly wait and the pain of longing, getting pregnant and losing two babies was worse than being diagnosed and living with my disability – Friedreich’s ataxia – a progressively degenerative neuro-muscular condition. My husband Richard and I have always fought hard to prevent my disability holding us back. We were used to working around problems to find a solution. Getting pregnant though, was totally out of our control. No matter what I did or didn’t eat, or what I did or didn't do, the coming together of events to produce a baby was in the hands of fate. Richard particularly felt the shock – he says now that he was naïve – prior to this point he always thought that having Friedreich’s ataxia meant I would be exempt from any other condition. If only! Seeking helpWe decided to try for a family straight away after we got married, 14 years ago, when we were still living in England. After a year of trying and getting nowhere, we followed advice and went to my doctor. She couldn’t understand why we wanted a family, even though she was a grandmother! She looked me up and down and said “Well, you don’t want children, do you?” She was extremely reluctant to refer me to a gynaecologist and it was at that moment I realised that my disability could be an obstacle. The doctor refused to refer us to a gynaecologist on the National Health Service and even told me to go back on the contraceptive pill! Richard and I both felt something was wrong medically and asked for a private referral, as we clearly were not going to get one otherwise. I was later diagnosed with polycystic ovarian syndrome. We sold everything we could to pay for private fertility treatment – stereo, car, jewellery. We started a course of artificial insemination while using medication to stimulate my ovaries into producing lots of eggs, but in eight months, I only had one success, which resulted in an early miscarriage. Dealing with discriminationUnfortunately, every passing month compounded Richard’s growing depression. He was beginning to buckle under the discriminatory comments aimed at us for wanting a family when I had a disability, and I was beginning to hate my body for not playing ball and starting to believe that maybe I wasn’t ‘good enough’ to have children. The consultant at the private clinic told us there was nothing more they could do and recommended in vitro fertilisation (IVF) as the next logical step, but he told us that we would need to undergo genetic counselling and we would be grilled about my disability. When I was first diagnosed with Friedreich’s ataxia, it was explained to me that it’s genetic. It's recessively genetic which means both parents have to be carriers and even then a child only has a one in four chance of having it. Richard knew this before we got married but it’s immaterial because we both knew we would accept and love our children no matter what. I told the counsellor that as I consider myself to be a worthwhile addition to the planet, how could I not afford my unborn child the same respect? How could I say “I only accept you if you haven't got Friedreich’s ataxia?” What does that say about my view of myself? We were accepted for the IVF programme and signed to refuse all diagnostic tests during pregnancy, as well as the offer to have Richard tested to see if he carried the gene. The IVF process was painful and undignified, but we just focused on what we hoped would be the end result. We saw our beautiful babies on a monitor linked to a microscope when they were only four cells big, before they were put back. That was something I will never forget – how miraculous we all are to be here and how fragile the whole process of conception is. I was monitored closely during my pregnancy, as I was classified as ‘high risk’ due to the combined facts that I was having twins and I was a wheelchair user. Interestingly, I was not classed as 'high risk' with my subsequent single pregnancy (a beautiful surprise!) so it obviously wasn’t a label linked to my disability alone, which was a rare, but good, moment of feeling standard and ‘run of the mill’ during the whole process. Sitting duckThe annoying thing is that once you ask for intervention and help, you seem to then be a ‘sitting duck’ for people’s judgments and accusations. If I could have just got pregnant normally and privately, we wouldn’t have felt like we had to justify our desires, decisions and lifestyle as a couple affected by disability. The private consultant said to Richard “Do you realise that when your child is 10, you’ll have a child and a disabled wife to look after?” Well, the reality now is we have two children who are almost 12 and one who’s almost six and I’m a full-time mum to them. I’ve always had a good support network around me to help with the practical things. But love knows no physical bounds and the children have all I can give. The point the consultant missed is that loving a child and giving them your time – such an important aspect of parenting – is not affected by your ability to walk or hold a cup. We are so fortunate that IVF worked for us. We have told Alex and Grace about how they came to be – it’s a story they love to hear. We are giving our children the information they need about the genetic aspect of my disability so that they can make their own choices and whatever they decide to do, I will love and support them in that, like any parent would. Useful UK organisationsBritish Association for Fostering and Adoption, the leading UK charity on fostering and adoption. Tel: 020 7421 2600 E-mail: mail@baaf.org.uk www.baaf.org.uk Infertility Network UK, a national charity providing advice, information and support for people experiencing or with an interest in infertility. Tel: 08701 188088 E-mail: via website www.infertilitynetworkuk.com For international contacts, please see the online version of this journal at www.dppi.org.uk |
Sarah Allen lives in Spain with her husband Richard and their three children. She discusses her experience of receiving fertility treatment and describes the discrimination they faced as a couple affected by disability.