I only went for a scan to get a photo. I didn’t expect to be told that my fifth baby had spina bifida, water on the brain and Edwards syndrome. During the scan I knew something was wrong. The nurse took ages and said nothing. Then a doctor looked at the scan and said: ‘It has a lethal condition. The child has no chance of survival and most people choose termination at this point’. Between my tears I said that I would continue the pregnancy. To begin with I hoped that I would have a miscarriage as it felt like death row waiting for four months. People were just beginning to notice my bump. But in time I began to accept it and had a real hope that I would see my baby alive. Over the next few weeks we met many medical professionals. Some of them questioned us about having a termination. We are Catholics and I found it interesting that people thought we were refusing an abortion for religious reasons, as if no one else would protect a disabled child. Edwards syndrome is a lethal condition and most babies die at birth or within hours. But killing our baby would be like saying you have six months to live so let’s kill you now. In the womb our baby was enjoying the best days of his life. He didn’t know he was disabled. I read from the Edwards syndrome website that many people continue the pregnancy to avoid the psychological consequences of abortion and that meeting your child, however briefly, helps you to grieve naturally. During the pregnancy we were always told the worse case scenario, as if to put us off having our baby. To begin with we hoped that the doctors were wrong. Although spina bifida is easy to diagnose, how it affects a child can vary. The Spina Bifida Association were very helpful; they told me to query the Edwards syndrome. At my final scan they agreed that Edwards syndrome was unlikely. The other problems remained, but the prognosis changed from our baby dying at birth to life with a disabled child. I had four months to come to terms with giving birth to a disabled baby. Like any other mother, I didn’t want my child to have problems. I wanted my child grow up, go to university, earn money and get married. So I had to think deeply about what a child was for, and I realised that my baby was to love. Raphael was born on 27 June 2009. His spina bifida operation was successful, but we spent a lot of time in hospital due to his kidney problems. Raphael’s life was short, but it was very precious. His siblings loved to visit the Evelina hospital to see their baby brother and enjoy the toys and activities there. Raphael liked to be in the middle of his brothers and sister. He was very popular and gave us lots of smiles and giggles. He especially smiled for the ladies. He was more alert than my other children at that age and had the best eye contact, so his brain capacity was fine despite the pre-birth prognosis. Many people offered to help us. My children’s school had special staff to prepare them for what was ahead. I really felt the help of the community. We were sent home from hospital in March 2010 knowing he would die as the kidney treatment wasn’t working. This gave us all a chance to say goodbye. Raphael died on Holy Saturday 3 April at 1.30am. He was exactly 40 weeks old to the minute. We felt that for some reason God must have chosen this day for him. His funeral was packed because so many people were touched by his life. Raphael lived nine months longer than we expected. I miss him but I have never been in despair or angry about his death. I think of Raphael whenever I hear the song ‘I just want to thank you for giving me the best days of my life.’ I think those would be his sentiments too.