Lisa's Story, Great Ormond Street Hospital

On the morning of our appointment Simon came up to me with some breakfast and the books he had brought as a wedding present with some names he had liked up till that point I hadn't even thought of baby names we both read some ideas and both liked a couple of names if it was a girl the name we liked was Ena meaning little fiery one, if it was a boy Simon liked the name Connall which meant strong as a wolf which I also liked.

We went down to Ormond Street, after getting lost around London we found it where we walked along to the cardiac wing, sitting in the waiting room we were eventually met by a cardiac liaison nurse from the cardiac wing called Mary Goodwin.

What Condition what was going on why were we there would someone explain to me what was going on Mary explained her role as a family liaison officer who could sit in on the proceedings and explain anything we didn't understand we wanted that. News she departed and we were shown into a room and greeted by Dr Yates a middle aged man who proceeded with his colleagues to scan us, for an hour and half I laid on the bed whilst being scanned all I could hear where the whispered lowered tones of the doctors talking in medical terms I didn't understand, all I could do was hold Simons hand and stare at the screen thinking why are we here. I don't understand

Eventually after an eternity in a low lit room being scan looking at the screen the scan finished and after letting me clean myself up, Mary was called back in it was then that the most devastating news I have had in my life and Simons life was dropped.

As Dr Yates gently explained, his words started to fall on very deaf ears, yes the baby had very serious heart defects, his heart hadn't developed probably, a condition called left Hypoplastic heart syndrome, his main vein and arteries were transposed, in the wrong place there was a blockage, there was a hole, it was very serious on a scale of 1 to 10 our babies problems were up in the 9's.

Yes there were procedures that could be done but that they were more palliative care and not curative care. On the whole the babies outlook was so very bleak and we had three options left to us.

We could terminate, an entirely reasonable option as the baby really was beyond help or we could continue on and except medical intervention though it was very unlikely to help our situation or we could let nature take its cause. Too numb to understand to speak to do anything I just sat there it was the twilight zone our baby who we had found out in the scan was a boy, I always knew it was a boy now was being handed a death sentence, the last words I remember that day before it collapsed into a black oblivion was Dr Yates saying it would be beneficial if we were to consider a post mortem, all I could think was why are you saying this to us. Why would I need a post mortem? I am having a baby.

Too shocked to take in any more information Simon and I went into another room for a few minutes to be by ourselves, to even except what had just been said to us, but all we could do was stand there crying not knowing what to think, why was this happening to us why. Mary came in after 5 minutes and gave us a big cuddle and brought us some literature in saying she would send us some more but now was not going to help us, we needed to go home and let the news sink in, she left us saying if we needed anything or just wanted to talk to phone her but now we needed to go home and start making some decisions. We had three choices but we were to shell shocked to even comprehend these decisions. we had a chance for some time to decide as we told we didn't have to make a decision now there wasn't a time limitation but we had to come to our decisions. On leaving the hospital it was like the world had stopped, I had gone silent, I was in my own little world I didn't want to talk to anyone Simon was trying to talk to me but I wasn't there, he started getting angry as I wasn't reacting and he felt he needed to just hear my voice to feel I was even there and had any grasp on what was happening. But I didn't I really didn't it had taken me nearly twenty weeks to come round to the idea I was pregnant now I was being told our baby was going to die I just couldn't absorb the information I was calm, in the end Simon started shouting at me Why wasn't I hysterical at this point, was I really that awful I couldn't manifest any emotion. I don't know how we got home in one piece but we set off from London and stopped off to get a drink and to inform our families of what we had been told. These were some of the worst conversations of our lives to have on a phone but thank god in some ways we weren't in the same room as it would have been so awful.

I phoned my mum first, spilling words out so fast that none of it was making sense but saying we were going to continue on and that termination wasn't an option as it was up to god or mother nature or whatever ran the order of the universe. Simon then rang his mum but became too upset to talk so I told her very calmly which surprised her as I was being too rational, was I not an expectant mother why was I so calm, how. I then spoke to my friends Darlene and Alison to try and get some advice, thought what advice could they have given me, but I think I was just stalling as I didn't want to go home all the baby stuff Simon and I had brought the week before which was at home, the cot, the pram, and all the nursery accessories I did not want to see it but eventually we got home.

When we both collapsed in bed, all I wanted to do was blot out this reality, escape to nothing, not have any understanding, if I did sleep that night I didn't Sleep for long I felt like I was in this black tunnel where no noise or sound could get in.

The next day, it was the weekend and it felt like the end of the world, what did we do now. Simon's mum had some flowers sent to us with a message of love to us, my mum came round to us as she worked in Hinchingbrooke hospital she phoned the day assessment ward to explain and see if there was anything that they could do to help us to see anyone who could speak to us but it was the weekend no one was available until the Monday. Livid at such lack of provisions she looked on helplessly as there was nothing she could do, All I wanted was the baby things out the house I didn't want them near me, my mum agreed maybe it would be a good idea to take them back to where we had brought them from the previous week. She said she was willing to do it for us and she phone the shop and explained the situation and asked if they could sensitively take them back without making us go through the front door, they were very good and understanding. Also it was decided to go to the cathedral to light a candle Simon would go with my step dad to take the babies bits back and then meet us there.

We went into the cathedral not because I am a religious person, or I believed it would do anything but just to feel like I was doing something. Both Simon and I lit a candle and wrote a prayer request, I can honestly say if I had believed in God at that moment I hated him, he was punishing me maybe for not believing in him for not loving Connall enough, it was my punishment that I deserved because I hadn't felt the right emotions about my pregnancy. The guilt, fear and anger where beyond any emotions I had ever felt.

I remember sitting in the pews with Simon's arm over me sobbing until my mum went and got a priest someone to listen to us maybe say something that would help thought what could possibly help us now.

I remember speaking to the priest and saying why would God not appear right now if he even existed and tell me why he was punishing us, the priest didn't quite know what to say to such a request trying his best to council us I never heard any of his words but he really seemed a very nice man. Though I felt very hypercritical as I really didn't have a faith to be there in the first place but I would have believed in anything if it would help me understand what and why this was happening and why to us.