This page is in honour of my darling angel, Joshua Edward Hall ( Joshy Bear)

Joshua's Story

 Dave and i found out we were pregnant shortly after our wedding in August 2009, we were thrilled to say the least. We already have a 2 year old Harrison and had planned on having another baby, so he was very much loved from the start. But at our 20 week scan we had every parents worse nightmare. At first the sonographer told us it could just be the way he was laying but she thought that he might have something wrong with his heart.
 It was shortly before christmas and they couldn't fit us in till after Christmas which was quite a wait, needless to say Christmas was quite and worrying. The consultant took us in and spent a good 40 minutes in silence surrounded by doctors, sonographers and a counsellor. We were then taken into a small room and told to take a seat. I knew it was not going to be good news. The consultant continued to tell us that Joshua had a heart defect and a very serious and rare one. Hypoplastic Left Heart Syndrome. This basically meant his left side of his heart had not developed and there was no cure. We were give 3 options; abortion (which would mean id have to give birth to him), compasionate care (he could go full terms and keeping him comfy till he passed away) or a 3 stage surgery that could possibly save his life.
There was no doubt about it we went straight with the 3 stage surgery! We were given an 80% chance of survival.
The next day we were invited to the Evelina Childrens Hospital for an emergency heart scan on our baby to confirm there findings and go through what would happen next. I prayed that night they had it wrong and our son was going to be fine. He infact wasnt and they confirmed the same findings. They were fantastic with our choice and kept a close eye on Joshua for the rest of my pregnancy.
I was induced on the 21st April at St Thomas' Hospital London at 38 weeks, this was so that Joshua would have the right care straight away. I wont lie my labour was long and painful as are most but he was worth every second. Joshua was brought into the world on the 22nd April 2010 at 16.49pm weighing a very healthy 7lb 2oz. He was perfect and not blue at all like we were expecting.
He was whisked off to NICU with his daddy and it wasnt until the day after i got to see him properly for the first time in PICU. He looked so tiny hooked up to lots of machines and monitors but i was allowed as many cuddles as i wanted. 3 days after Joshua was born he started deteriorating and needed to go on a ventilator to help him breath and give his heart a break. 4 days after he was born Monday the 26th April Joshua went down for his very first Open heart surgery "NORWOOD - STAGE 1".  Joshua flew through his op and apart from being on the ventilator a further 5 days and going on dialysis to help his kidneys, he done very well. At just 2 weeks old he was home and breastfeeding which was amazing! He lost so much weight though as expected and we took him home weighing just 5lb9 well over the usual 10% loss most newborns have.
Our first few weeks at home were wonderful. We were like new parents again worrying about everything, i even got a breathing mat for Joshuas crib so i wouldnt be awake all night worrying if he was breathing!
At 6 weeks old Joshua had a review at our local hospital. An ECHO showed Joshua had a mild leak in his Tricusped valve and we spent a further 7 days in hospital under going yet more medication to control it. We hoped that would be the last of the problem until he was older. We spent many weeks after coming out going back and forth to hospital and doctors as Joshua become irritable and sick. The only answer i ever really got was Reflux or Colic. I put it down to dairy intollerance and cut everything out my own diet to see if it helped. It did help to begin with and i had a smiley happy baby. But then he went down hill again and we didnt no why. On the 4th July Joshua woke that morning really not himself. He refused to feed, he was lethargic and very blue. I phoned the local hospital who assumed i was being a over protective parent so i was forceful and took him straight up to the ward. I was told he'd have to stay in as he wasn't feeding he would need a drip and that he probably had a virus or bug. I took myself home to get my over night stuff and returned just over an hour later. In that time Joshua has deteriorted so quickly he was limp, pail and breathing heavy. I took him off Dave and cried my eyes out. The doctor come in and told us that there was an Ambulance coming down from the Evelina to get him and take him somewhere that knows him better. I remember being so angry because they said it was "probably" just a bug!
The ambulance turned up with the retreaval nurse who we had met when Joshua was in the Evelina the first time. She sat down with us and explained Joshua was infact in Heart failure and was in a critical state. He was ventilated and blue lighted to the Evelina. Luckily Dave and i were able to go inthe ambulance. The whole journey was a blur. Just 35minutes later we arrived and rushed back to PICU surrounded by doctors, nurses more machines and monitors. We didnt sleep that night. The next day the consultant come to see us and explained Joshua would need further tests to see what had caused his heart failure. Initially his heart was fine his BT shunt they had put in, in stage 1 was perfect! The ECHO showed that Joshuas leaky valve had ruptured. Which in simple terms meant the tissues that hold the valve in place had come away which meant the valve was leaking dramatically, there was not enough blood getting around his body. His heart rate was over 200!
The doctors wanted to do an MRI but he wasn't allowed due to his heart rate so they had to take him for a Catherterisation. This is where they insert a very small tube up through the groin and up a vein to the heart and insert a dye to get clearer pictures of the heart.
The surgeon was optamistic and agreed to go ahead and fix the valve but also wanted to combine it with his stage 2 (Glenn) which was early but better for Joshua. Less stress overall. Although the surgeon said he would never be able to repair the valve completely if he got it back to the state it was in a few weeks before he'd be happy.
Joshua was taken down for emergancy stage 2 and valve repair on the 8th July and was down for just 4 hours. The surgeon Mr Anderson come out smiling. "I fixed it!!!! I done it there is no leak what so ever!" I cried with joy , amazing i thought. What an incredible man he had saved my babys life twice now!
Joshua done well that night, although still puffy where his kidneys were not working but things looked up.
The next day he had an ECHO to make sure everything was still ok. Devistating news showed that the valve repair had come un-done. They had to go back in and try and repair it again. It was just one step back and Mr Anderson had saved his life twice before why couldnt he do it again?
The same day Joshua went back in i kissed him so hard this time and told them to bring him back to me safe!
Again Mr Anderson come out smiling, a smile he often held. "im not as happy but he is ok!"
I was still happy, he had done it again - INCREDIBLE.
Unfortunatly Joshua's kidneys and other organs took a beating and was on dialysis again to help remove all the fluid. He was so puffy he looked like a little monkey where he had so much fluid around his head it had made his little ears stick out. Still as handsome as ever though. He remained strong and fought so hard. We spent every minute we could with him.
On Saturday 10th July we were moved to the Ronald Mcdonald House. That night i went to bed miles away from my baby thinking "oh god im so far away what if something happens". The next morning i recieved a call at 7.30am from the lovely nurse that was looking after him over night. "You might want to come in Sarah, Joshua hasn't had a good night, i think you should be with him".
My heart broke into a million pieces that second and we rushed to be with him. It wasnt until i saw Joshua i realised that this could be it....god i prayed it wasn't but gut instinct told me to prepare myself! I lifted his little hand and saw that it had turned black as had his other hand and feet. Doctors rushed around him, more tests done, scans, ECHOS. We waited for what seemed like hours to get an answer.
The doctor sat us down and explained Joshuas Lungs were not giving out enough Oxygen and to prepare for the worse. They said he could bounce back but chances were he wouldn't. I cried so hard for him and my mum rushed to be with us along with my step dad and our son Harrison. We got Joshua Christened that morning and held onto hope. As the day went on he didnt improve and tests showed his body was getting less and less oxygen. I just kept staring at the monitors expecting him to slip away but he held on. More family come to join us and we were moved to a side room to be with Josh. I cuddled him for hours and prayed so hard dispite not being religious, what could it hurt! The nurse and doctor continued to care for Joshua working around us all and giving him every care in the world dispite knowing he wasn't going to come through it.
About 4.30pm Dave and i agreed it was time to let Joshua go. His brain was starving of oxygen and i couldn't bare to see my sweet little soldier suffer any longer. We cradled our son as everyone said there goodbyes and the doctors removed all his wires and finally his ventilator. Joshua held on for just a few seconds after and gained his angel wings shortly after 5pm 11th July 2010. His heart was the very last thing to give in he fought so strong and hard. He was an incredible little boy and the bravest little person i have ever met and have to privilage to call him my son! Im so proud of him.
I have the Evelina to thank for so many things. Without the care and dedication from the Doctors and Nurses i would never have got to spend the best 11 weeks of my life with my little soldier. With out the support from staff and organisation we would have never made it as far as we did. Im so grateful for everyones support and love they have shown to us and Joshua.
ECHO doesnt get nearly enough recognition for what they do to support parents in our situation. So many people assume we were at Great Ormand Street needless to say they had never heard of the Evelina. Which is without a doubt the best hospital in Britain with the best doctors, surgeons and nurses. I could never thank them enough for what they done for us. I hope every penny raised makes a huge change to another babies life.

This is "JOSHUA'S HEART FUND in memory of my little soldier Joshua Edward Hall 22.04.10 - 11.07.10

Always in my heart Angel xxxx