Annabelle Egan, 33, Mornington, Vic
My boyfriend Sean had spent the night tossing and turning beside me. As I looked at him, I was shocked to see him wide-eyed with worry. It was meant to be a happy day for us, the day we signed the paperwork on a block of land we had bought. It was the start of our future. Except that now, as watery sunshine filtered through the window, Sean had something he needed to say. 'I don't think I'm ever going to change my mind about having children,' he told me quietly. I'd be lying if I said my heart didn't race at that moment. I wanted children, I knew that and Sean knew it too. That's why he was telling me on this momentous day. He was giving me a choice. Did I give up this man who I was so in love with? Or stay, knowing he might not change his mind? Deep down, my instincts were telling me that Sean, 43, was just scared. It was hardly surprising.
When we'd first got together a couple of years earlier, he had been quick to tell me about a medical condition called Huntington's disease that ran in his family. Symptoms were a devastating combination of Alzheimer's and Parkinson's, starting off with tremors and deteriorating into dementia, uncontrolled movements and early death. While Sean didn't yet have it, his father died from it and Sean had inherited the gene that caused the condition to take hold. It meant he had a 90 per cent chance of developing the disease. If he had children, there was a 50 per cent chance of them being affected. But Sean was never one to wallow in self-pity. Positive and proactive, he took enormous pleasure from being an uncle and in keeping himself healthy. The trouble was, Sean had no idea when the disease might strike. He was 10 years older than me and I could tell he was terrified he might be a burden. But I loved him unconditionally, no matter what the future held. 'Let's just see what happens,' I said with a smile, determined to think positively.With advances in technology, I was convinced that there were options open to us that might take the worry out of having children of our own. Over the following months, the more we talked about it, the more I realised that Sean did want to be a dad. 'But I just can't bear the possibility that my kids could be born with a life sentence,' he confessed. Finally, a year later, during a routine appointment, Sean's specialist suggested we visit an IVF counsellor to talk through the options available to us. 'You could get pregnant naturally and at the 12-week scan we could have the baby tested for the Huntington's gene,' the counsellor told us. 'Then you could decide what to do.' My blood suddenly ran cold as I realised what she meant.If our baby tested positive, we could abort the pregnancy. That simply wasn't something Sean or I could do.
Fortunately for us, there was another option. 'We could use IVF to fertilise your eggs and then remove two cells from each embryo to test for the gene before implanting them,' she continued. It was a process called pre-genetic selection, and any embryos that tested positive for Huntington's disease could be discarded. Those that were free of the gene would be implanted instead. The more I thought about it, the more amazed I was that doctors could design our baby to beat a deadly condition. It seemed incredible, like something from a film. But if the IVF was a success it would mean we could become parents without the fear of our child having Huntington's. Sean and I were both over the moon. A year later, I underwent the procedure at a private hospital in Melbourne. Doctors could only be sure that one of six suitable embryos was free of the Huntington's disease gene, so that embryo was then implanted into my womb. It was an emotional time. Part of me was excited, desperate to know if I was pregnant, while another part of me was terrified that the IVF might have failed.But almost three weeks later, after a blood test, Sean and I were in a car park when the doctor rang. I was trembling so much, I could hardly press the button to answer the call. 'Congratulations,' she said happily. 'You're pregnant.' Sean and I cried with joy and relief. Suddenly I realised just how much being a dad meant to Sean. I could see it in his excited eyes. As if to prove it, seven months later, just a few weeks before our baby was due, Sean proposed. Four weeks on, little baby Scarlett was born, weighing a healthy 3.8 kilos. Tears filled my eyes as I watched her devoted dad hold her in his arms for the first time. She was just perfect. A tiny miracle who made us the happiest people in the world. At just eight months old, Scarlett became a flower girl for our wedding, which was held in a beautiful rose garden near our home.In his groom's speech, my new husband paid tribute to his daughter. 'I never thought I was going to have children,' he said, choked with emotion. 'I thought it would be enough for me to be an uncle. But since Scarlett's been born I haven't stopped smiling.'
Ten months later, Sean's still smiling. He's a wonderful father and we're blissfully happy. Of course we don't know what the future holds and some days I feel sick when I think about what might be in store. But as Sean's fit and healthy now, I feel we need to make the most of this wonderful time in our lives. We'd love Scarlett to have a brother or sister, which is why we've started a new round of IVF and once again we plan to have the embryos tested for the Huntington's gene. Some people might say that Scarlett is a 'designer baby', but we haven't used science to choose something superficial, like her hair or eye colour. We've used it to guarantee our daughter a Huntington's-free future. I guess we all have a choice in this life - to see the glass half full, or half empty. Sean and I are positive people and whatever happens, I know that attitude will see us through. |
