Edwards syndrome is so rare,its a 1 in 3000 chance to be you......that's what we were told.We were that one in 3000. The story is long, but rare. My partner and I, along with others who are on or been on the same path, like to bring awareness of this condition to the public. And every time we do, we always hear of someone who's been there too or knew someone its happened to. A lot of women loose there babies to this condition before 3 months gestation and the government isn't even investigating the condition or trying to find out how many are lost to this condition.They don't even bother to investigate the children that DO survive and how we can help them.Every time a child is diagnosed in the womb, we're advised to terminate. And if a child does manage to make it to this world, against all the odds, the medical profession are against treating them. Children born with this condition are classed as,"incompatible with life"......We who live with it or seen it,beg to differ.
Please read what happened to us, and if you can help us in any way, to promote the condition or the small charity that is there for others,(SOFT UK), it would be most appreciated.
Finding out you are pregnant, is the best news we could of had, as we had been trying to get pregnant for a year. Like every other pregnancy, we were happy and thrilled that we were going to have our own baby. We went for our first dating scan late, at 15weeks at Nottingham City Hospital. Everything was fine. We went for our detailed scan late, at 22 weeks and this was the first time we heard that something was not quite right. Our sonographer had found one Choroid Plexus Cyst  (tiny air bubble) in our baby's brain, so she started to check for anything else. Choroid Plexus Cyst's are common place in babies, but if the sonographer can't find any other markers to say there is something wrong, then the cyst is ignored. But our sonographer then noticed that our baby had a cleft lip and informed us that we would need to speak to one of their specialist sonographers. We were placed into a small room tucked out of the way from everyone else.  That's when I looked at my partner Lee, and said, "This isn't good!". I thought that if there was really nothing to worry about then why have we been put in one of these rooms? Soon a hospital midwife came to chat to us and said that she could arrange another scan in a day or two, so that more specialists could come and find out more. But I asked if it would be possible to be seen today. There was no way I could go home not knowing what was happening. We would have to wait a couple of hours, but we could be seen. Lee and I went out of the hospital and just held each other with tears of worry. We reassured each other that a cleft lip and palate was something we could get over and deal with. We reassured each other that at least it wasn't worse. We tried to eat lunch and then returned a couple of hours later to have yet another scan with more specialists in the room.It was confirmed, our son had a cleft lip and possible palate. Our specialist sonographer looked for anything else and she really couldn't see anything. But she felt that she needed to warn us of other possibilities that could occur. She told us that the cyst and the cleft on its own is something not to worry about as it is totally treatable. But if anything else is found then there could be the possibility of Edwards. This was the first time we heard of Edwards syndrome. I asked her to explain what it was and she tried to dance around telling me the truth, but I insisted. That's when she told me that Edwards babies just don't live. At that moment my life stopped! Lee and I went home in a daze. Not saying a word to each other. In my head I was trying to process what was happening, but I just couldn't. I decided that as long as nothing else is found then all will be OK. We can get through this. And deep in my heart I thought, if they find anything else I will have to have an amnio test done. An amnio test was offered to us already, but I said no. If my baby only had a cleft lip and palate I would love him anyway. I didn't need anymore tests to know that.Two weeks later (24 weeks) we had another scan to try and get another good look at his face. We managed to see his cleft lip clearly and that it was only a small one. This was all good news. Then our specialist started to look for other things. The room went quiet. After about 5 minutes I could tell by her face that she had found something. She then began to explain to us that our baby had a very small VSD (hole in the heart). That was it, I knew I couldn't avoid it any longer. I was going to have to face an amnio. Because Nottingham didn't have a Paediatric Cardiologist, we had a consultant to consultant referral to a heart specialist at another hospital. Two days later we visited Leicester Glenfield hospital. The heart specialist actually came in on her day off to see us. She explained that, Yes, there was a hole and it was in between the two main arteries of our baby's heart.  The artery to his lungs was bigger than what it should be and the artery to his body was too small. She was worried that if it didn't get any bigger it would be dangerous. She told us that he was totally operable and would require open heart surgery at three days old. But then she turned to a more serious tone and strongly advised we have an amnio test done to rule out Edwards syndrome. She made it very clear that if the baby had Edwards syndrome then they would not be so eager to operate as the babies usually aren't strong enough for surgery. But if our baby didn't have Edwards then they would have everything on standby, ready and waiting for him. She really said it would be best. So that afternoon I rang Nottingham City hospital and said I wanted the amnio.At twenty five weeks I was booked in for the amnio. I never want to go through that again. It is painful. But I knew it had to be done for the baby's sake as well as my own. After it was done I felt that was it, I had done everything I could possibly do now to help our baby and now it was all in the hands of the powers that be. We had the amnio on a weds and were told that we could have the results by the same Friday. We arranged with the midwife that if the results came back by Friday she would phone us when Lee was back from work so I wasn't alone. The call came. As soon as the midwife asked if I was sitting down I knew it was bad news."Stacey, I'm so sorry. Its full Edwards".I just passed the phone to Lee as I screamed at the world. The midwife told him that she would call back in a few days to arrange the next steps with us.Our world was destroyed. We cried for hours and hours. I cant even remember how we got through the next week. We were offered a termination, but it would mean that I would have to go through early labour. I was told at some point that 95% of Edwards babies terminate themselves before 3 months pregnancy. The 5% that made it past this point had a 10% chance of making it into this world. I was already twenty five weeks gone (5 months), I decided that he had made it this far.... Who was I to stop him now. We decided to let nature do what it needed to do. So for six weeks we knew we were not going to be able to keep our baby. So we must enjoy him while we could. The only way I was able to carry on was to say and think...."My baby is born to be an angel", "I'm carrying an angel who wanted a brief time here with us on earth".It may sound silly, but it was the only way of keeping my sanity.
Monday July 6th 2009 I had an appointment at the hospital with the anaesthetist on this day... But just before leaving my home I nipped to the loo and noticed I had a show. By the time I got to the hospital I had started to get regular cramps. Like period type cramps. After seeing the anaesthetist I was taken over to the delivery suit to be monitored. I was internally examined at 4pm and my cervix was not doing anything. So a swab was taken to see if I was in labour. My test came back positive. I was in early labour. The doctors wanted to re-examine me at 9pm to see if my cervix was doing anything. They checked and it hadn't moved so I insisted I go home so I could pack my hospital bag and return in the morning. Monday night was awful.I was getting bad cramps every 3-4 mins and didn't get to sleep until I passed out at 3am. 
Tuesday 7th - Thursday 9th July 2009 Woke up and I was still in pain and the cramps were still going. I rang the hospital and asked if I could return to be rechecked. I was booked in for 10:30am. Again just before leaving the house I nipped to the loo and found that I was bleeding. It wasn't gushing or flowing... Just when I wiped myself.I walked around the corner of my street, with Lee in tow carrying bags galore. I decided to ring the hospital just to let them know I was bleeding. When the midwife told me to stop where I was... Hang up and dial 999. I did this and within three minutes the ambulance arrived. I was strapped in the back with Lee and was taken to the hospital. I got the blue' s & two's too.... Very exciting. But I wish they wouldn't make you sit backwards in the ambulances. Whats wrong with sitting us the other way? Anyways... I was in the hospital within 10 minutes. Put on the delivery ward and after being examined I was told I would have to stay for 24-48 hour obs. I was given a private room on the labour ward. So basically since then, through Weds and most of Thursday I was poked and prodded. Tests galore. Pain killers galore. In the end the doctors said that I was showing signs of infection some where in my body but they couldn't work out where. I didn't feel unwell, I had no temperature and they were sure that there was no infection in my womb... So it was a mystery. And because I was neither getting worse nor better, they really didn't know what to do with me. I sent everyone home late Thursday evening. Telling them not to come back until I was being wheeled into the delivery suit in labour!!! Soon after everyone left my cramping pains returned at regular intervals and the painkillers were just doing nothing. So I decided to do laps around the ward. Walking was better than laying in bed. I walked for hours. I even got chatting to a lovely young girl who had been admitted that day. She was alone in a ward room so I walked laps around her room while we chatted. She was so nice... And I never got her name. By 10:30pm I just couldn't take it anymore and headed back to my room. I walked in my room and had the overwhelming urge to squat. As soon as I did my waters broke and that was it.... The cramps turned into contractions. 
The midwives managed to get me back on my bed between contractions...but there wasn't much of a gap.I had rang Lee,my mum and best mate to say....get here quick.Lee arrived within 10 mins.I was still in my room being made ready to go down to the labour suit.But my contractions were only 2-3 mins apart at this time.Got down to the delivery suit and was examined by 11pm.I was 3cms dilated.I started screaming for my epidural!!!! As I was warned that Simon's birth would be quick.I was given gas and air and had the biggest laughing fit ever!!! While I was telling every one off saying,"Its not funny,don't laugh!",but I was the only one laughing. As the epidural was being prepared I was in absolute agony.How Lee managed to cope through my screams of anguish and pain I don't know.I had moments of wailing in tears as I was so upset that I was going to have to say goodbye to my baby now.When the epidural started to take affect things slowed slightly.I would highly recommend having one.You can still feel everything but the pain is vastly reduced.My mum was then allowed in to me.It was about 11:30 pm now. I was still getting my contractions but I absolutely refused to push yet.Lee was having to put his full weight on my right hand so I had to push him upright.I was focusing all my pushing into my hand. 
At 11:55pm I was re-examined and I was fully dilated.My MW then told me it would be OK to push.....but I just didn't want to.I didn't want to loose my baby....but I knew there was obviously no stopping this!3 Pushes and his head was out....one more and Simon arrived.It was Friday 10th July 0010hrs.Simon gave out one cry....a sound I will never ever forget.We all cried with joy.Simon opened his eyes once and reached out once.The cord was cut and he was whisked to one side.Lee stayed by his side the hole time.The doctors checked him over and said his breathing is good and his heart is beating well.Lee cut the cord again and Simon was wrapped up and placed in his daddy's arms.Lee sat beside my bed.The MW was still struggling to get my placenta out.It just wasn't coming.There was the chance that I would have to go into surgery to have it removed....but I wasn't going to allow this.I didn't want to miss any possible time with my baby.Having surgery would mean that my baby could die without me.My MW placed me on a new drip to help make my placenta come.Then we were left alone with our baby.Lee passed him to me and I did nothing but cuddle and kiss him.Hold his hand,look at his feet.His thighs were massive...just like his dads.Adam was brought in and held his brother briefly.Then as I held him again the rest of the family were allowed in to see him very quickly.Once everyone left Simon was re-examined and the doctors confirmed that his heart was failing. 
Lee and I held him alone,together on the bed. I held Simon's head close to my lips and between kisses I said... 
"Thank you sooooo much for being so strong and so brave.And letting us love you while we could.We love you so very much and we always will....but you don't need to stay any longer than you need to.Its OK,we know you love us and its OK to leave us.We love you", 
And with that I was blessed to see a shadow lift from his face....and I knew he had gone.It was 01:10am exactly.10 minutes later the doctor re-examined him and confirmed that he had passed.Simon was placed back in my left arm and in my right lay Lees head sobbing with utter grief!!! I just lay there,consoling Lee whilst feeling relieved that my baby suffered no pain. 
After this I was able to birth my placenta and the MW let me see it and we examined it together.And she told me that it was not a healthy placenta.She pointed everything out to me.Simon was lay in a crib with new clothes and belongings.I was cleaned up a bit and the whole of the family was let in,so we could announce that Simon had passed.They all got to hold him and cry.Then the rest of the morning was spent getting showered.Lee helped me throughout.Then together we cleaned and dressed Simon's body.The MW helped take feet and hand prints.Locks of hair.She even arranged tea and toast for Lee and me.At about 6am we were all cleaned up and the whole of our families were allowed back in.We all had tea and toast.Lots of holding and passing Simon around.It was sad...but a peaceful kind of sadness. 
Everyone left and Lee and I were returned to the labour ward with a private double room and bathroom.Lee slept for a few hours while I lay on my bed cuddled up with Simon.I even fell asleep with him a while,which was lovely.I left to get some breakfast and chatted with all the ladies who had got to know me during the week.They all knew my story and were just lovely with me.After an hour or so I returned to my room and when I looked at Simon...something had changed.He was starting to not look like my little boy any more.I tried holding him.But really did feel right, he just wasn't my baby anymore.I knew this meant it was time for me to leave...before this feeling got any worse.But it took the hospital hours to let me go.Constantly coming up with forms or things,medicines or people I should speak to before I left.I hated it.I just wanted to go home.But when that moment came I had to fight the overwhelming feeling that I was abandoning my baby.It was horrid I got home and fell asleep for an hour....I woke up screaming....because he was no longer there in my tummy and I had left him behind.Lee held me until I passed out again.Since then we have both missed him terribly.
Two weeks later we had Simon's funeral.It was everything we could of hoped for.It was so beautiful and peaceful.After the service we all wrote notes of love and tied them to a bunch of balloons and let them go.
Life since this has not been easy.One day you are fine and things are normal.Then the next everything feels wrong and you just have to cry and cry.We have all our photos and a memory box for Simon.But I do find it hard to look through it,because at the end of looking at all his things I am angry that I am holding a box and not my baby.
Lee and I are already trying for baby number 2.It may seem too soon to some,but we are not trying to replace Simon.Simon will be our first son and with us in our hearts forever.
Stacey & Lee James.
****UPDATED 22nd Sept 2010****Lee and I have a 3 month old baby girl called Lucy. She is perfect in every way and we are so happy. Simon is always in our hearst everyday and every now and again he'll leave a little message to say he's always there with us :)
****UPDATED 8th May 2011****Lucy is now 10 months old, and soon it will be Simons 2nd birthday in heaven. We are still in contact with our SOFT Family every day and attend the annual meeting.