and I confirmed this with our consultant. We still went on our holiday, which was probably the best thing ever. Only the two of us and many tears. Once we were back from Sweden we got an appointment in Dublin straight away for the Thursday of that same week. We had a further, more detailed scan and the consultant in Dublin confirmed what we had already been told. During the scan it also was visible that Maximilian was not swallowing amniotic fluid and that his heart had a hole in the dividing wall. After the scan, they proceeded with the amniocentesis, during which my husband observed the screen. I turned my head away, mainly because I did not want to see the needle going into my body, but also because I felt that I did not want to see a procedure that I never thought would have to be carried out. The consultant had to halt a couple of times as Maximilian reached out towards the point where the needle was supposed to go into the uterus. It was almost like he knew what was going on. We got the results on Tuesday the following week and they confirmed Edwards Syndrome. I was 25 weeks pregnant at that point. From then on, I concentrated on Maximilian, who was ALIVE inside me and happy where he was. My husband and I tried to be as positive as possible to give him good vibes. I felt I had no right to be sad as long as he was alive so that he would not feel any negative emotions. Of course we both cried a lot and very often, but we did try very hard to give Maximilian the time of his life while we could. He was also moving inside me and even though there was a lot of fluid around him I felt his kicks and my husband even tickled his feet. We knew that he could die in utero or during birth. Nobody could tell us exactly what would happen. We read and read and read - but nothing could give us answers. We found out all the details about Edwards Syndrome and after a while I even started losing that feeling of guilt, that it was us who were at fault somehow. The next few months went by with many ups and downs. I had an absolutely gigantic bump, since I had excessive amounts of amniotic fluid. I eventually went into labour and about 30 hours later Maximilian was born naturally on December 21st 2008 at 20: 35h and lived in my arms on my chest for 35 minutes. He weighted 4lbs 6.5 oz, had dark curly hair and long eye lashes like his Papa and long legs like his Mama. He passed away in my arms and it was very peaceful. He was dressed by his Daddy afterwards and looked absolutely adorable in his little striped outfit and his blue hat. It was not until the next day that I was able to cry and I cried for a long time ? why did I have to give my son away? Why was I not allowed to keep him with me and take him home? While we were in hospital the staff were amazing to us and we were handed a little ' Wrapped in Love' item, teddy and blanket, while I was still in labour. It upset me at first as it made it seem more real that Maximilian was not going to stay with us, if he survived labour, but it was a lovely gesture from the midwife. Maximilian will be with his Teddy forever and I have kept the blanket with his stuff in his room. We were also allowed all the time we needed to say our goodbyes and we got him blessed on December 22nd in the afternoon. The chaplain was very nice and understanding. Around the time of Maximilian's birth the hospital was closed off to visitors due to the winter vomiting bug, but one of the midwives had arranged that both our parents were allowed in. So they got to meet and hold Maximilian shortly after he had passed away and they were also able to attend the blessing. Unfortunately none of his aunts and uncles got to see Maximilian, all they know are photos and his little white coffin. On the day of the funeral, Christmas Eve- we had a small prayer service in the chapel of the hospital and with his coffin between us on the back seat of our car we drove to the graveyard. My husband carried Maximilian in his tiny coffin to his grave. Once they lowered the coffin it felt like my heart was going to be ripped out and I thought I would never ever be able to stop crying. Somehow the days of Christmas went by and before I knew it, it was a new year. It is all a bit of a blur and I don't know how I got to where I am now. I think of Maximilian every day and I ask myself every day what I would do if he was here now. I imagine him getting older. Earlier this year I decided to take part in a 10K race in his memory and raise funds for ISANDS. It seemed that it gave me a new purpose and I enjoyed all the running and training for the run. On the day of the race I was very excited and I had Maximilian's name printed on the bottom of the T- Shirt that I had received from ISANDS. My husband decided to get a T- Shirt with his name as well and during the race we were very proud parents. Afterwards it was very emotional and I cried for all that should have been, for everything that I should have and all that I have lost. As I said, I don't know how I got this far and I know there is a long way ahead yet, but I have found great comfort and help through ISANDS, especially the discussion forum and the parent support meetings. One thing is for sure, I will never understand why this had to happen, but I will always love my son and thank him for coming into my life. With love XXX Alexandra Fenton isands newsletter 13

Happy 40th Birthday in Heaven Pierce Matthew ( 1st June 2009) If I could have a lifetime wish A dream that would come true I'd pray to God with all my heart For yesterday and you A thousand words won't bring you back I know because I've tried And neither will a thousand tears I know because I've cried You've left behind my broken heart And happy memories too But we never wanted memories We only wanted you. " I met your wonderful Mummy yesterday at the Mini Marathon You are blessed to have such special parents." Therese Farrell Jason Nash 20th November 1985 We wonder are you 23 Or a baby did you stay Is your hair still blond And your eyes oh so blue Who would you look like If only we knew If only we had a picture of you Do you know you have a brother I bet you do Cause he knows all about you Would you have been a musician Just like him Or something different Like a computer wizard A million times we think of you A million tears we shed for you For the little man We never got the chance to know We love you son/ brother Love always Mam, Dad and Darren Jean & her daughter isands newsletter 14