Sunday 29th March - the move to Birmingham Childrens Hospital and official Diagnosis

Sunday morning arrived. We had forgotten that the clocks had gone forward an hour. We got out of bed. I was OK to begin with. Phil tried to get me to have breakfast as I hadn't eaten much all week. At this point, I lost it... I was such a mess. My milk had come in on the Saturday night, so i was in agony, and was feeling so angry and scared all at the same time.

I remember bursting out into tears, and then the next thing I remember was Phil passing me the phone. He had rung Fiona my midwife. I don't remember what I said to her, all I remember is crying and Fiona telling me that I could call her/ the other midwifes whenever i wanted if I needed to talk.

I got in the shower. I heard the doorbell ring. It was someone from Phil's work with a present for Joe. I thank my lucky stars that it was not me that answered the door as I don't think that I could have handled explaining what was happening.


My family had stopped in Leicester. I am not sure where, but when we left the house i could see the cars and Phil's mums and dads. We got to the hospital. Joe had a stable night, so they were continuing to try and keep him that way.


Everyone came to see Joe again. Phil's sister had also come down to see him. Looking back, I think people wanted to meet him in case they did not get the chance. My only regret is that my family and Phil's sister met Joe (and each other) for the first time in this situation.


The Play Worker had started a little diary for Joe, explaining what was happening. This made me and every one else cry. It explains to Joe what was happening to him, with photos.. I was hoping to keep this diary going for him, but I put it in my bag and forgot about it... I am gutted about that now..

My family needed to leave to head back to Colchester. I walked with them out of the hospital. At this point, I was feeling OK. I was frustrated that I could not hold Joe, but i think that I was just relieved that he had made it through the night. I showed my mum and dad, my sister and brother and his girlfriend photos that were on my camera. I was trying everything to make them stop that little bit longer. I did not want them to leave me.

I don't remember much else about the morning. The next thing I remember is being told that Joe could be referred to Birmingham Children's Hospital that day and that Birmingham would be able to do further investigations, so this was the best place for him. We agreed that Joe would be taken there.

I remember looking at Joe's toes... his feet were so swollen that his toes looked like they did not fit, and his skin looked as though it was cracking. His eyes were really swollen as well.. he didn't look like Joe anymore, but perhaps this helped in a way as he did not look like our baby.. he could have been someone elses baby.


Sue, the nurse, was fantastic. It took hours to get Joe ready to be moved, but she made sure that everything was done correctly, and in the middle of this, arranged for me to express milk. One of the other nurses even lent us her lunch box so we could keep the milk cool. I don't know what I would have done without Sue that day.

Joe was finally ready to be moved, I think that it was about 6pm by this point. Sue said that she would go across to Birmingham with him in the ambulance. There was a doctor go as well, but I cannot remember much about him. This meant that she would finish her shift really late, but she didn't seem to mind. We were asked if one of us wanted to go int he ambulance as well, but I declined as I wanted to be with Phil, and I knew that Joe was in good hands. We were told by the ambulance crew and Sue not to try and keep up with the ambulance, and that if it stops, we need to keep going, and not stop to see what is happening.

I remember Sue asking whether they had got the Crash Kit, and feeling physically sick when I heard this. I have seen Holby City/ Casaulty enough times to know what a Crash Kit was.

I remember someone saying to me that God is with us, and that he will take care of our son. This really got my back up at the time, and wanted to say to her that if there was a god, then why the hell was he doing this to us.. but all i could say was Thankyou. I know that she was just trying to comfort me at the time, but the last thing I wanted to hear was God was with us.

As it happens, we were in front of the ambulance most of the way to Birmingham. Even though the blue lights were on, cars would not move out of its way, especially on the M69. This was horrible to watch as we knew that it was our baby in the ambulance.

Once we got to Birmingham, the ambulance over took us, so they got to the hospital first. I remember being met by the ambulance crew at the hospital, and being shown the way to intensive care. We had to sit in the family room, and were told that someone would come and get us shortly. I don't remember how long this took, but when we got to Joe, Sue and the doctor were about to leave. Sue gave me a big hug, and wished us luck. I really did not want her to leave!

The next thing I remember is Joe having a heart echo done. This took forever. We were then told what was wrong with Joe. We were told that Joe did not have Hypoplastic left heart syndrome as the left side of his heart was normal size. They confirmed that Joe had:

A ventricular septal defect (VSD) - hole in his heart

An Atrial septal defect (ASD) - another hole in his heart

Hypoplastic Aorta - his aorta was only 1mm thick which meant that his blood could not get to his body

Aortic Valve atresia - his aortic valve was too small.

As bad as it sounds, we were happy that Joe did not have Hypoplastic left heart syndrome, as this would mean that Joe's heart would need to be changed to only have one pumping chamber (Fontan procedure). At the moment, medical people are not sure of the long term outlook for children who have this, and could have meant Joe needing a heart transplant in his twenties.

The cardiologist also said about surgery - and what could possibly be done, and that we needed to decide whether we wanted Joe to be operated on. He also said about 2 cardiac arrests that Joe had while he was in Leicester. This was a huge shock, as we did not know that Joe had 2 cardiac arrests, but this would explain why it took them so long to settle Joe in Intensive Care.

However, this also caused further complications as the doctors in Birmingham were also concerned about Brain damage due to the cardiac arrests. They said that they could do a brain scan, but this cannot guarantee that there is not any damage. This was another blow, and was unsure about how much more I could take...

And, on top of this, we were told that Joe had Liver and Kidney failure (which we knew), but although they were pretty sure that his liver would fix itself, they were not so sure about his kidneys, so further tests would need to be done, and he would also have to be on medication to help his kidneys.

That's all I really remember from the Sunday... apart from the drive back to Leicester. Phil kept missing the exists of the motorway. We were both so tired, but poor Phil had to drive home. I don't even remember walking through the front door, or going to bed. I remember being "numb" and not being able to cry anymore.. I think I had gone into a state of shock, as I felt like this was not really happening to me.

I remember thinking that I cannot make a decision about whether or not to put Joe through the operation, as I did not want to be held responsible for ending our sons life at 2/3 days old.. and that how can I make this decision when most of the time, I cannot even decide on what to have for dinner, or what to wear when i get up in the mornings.

This is the Kit that Joe was put in ready to be taken to Birmingham Children's Hospital.

You can just see his Lucky Hat