GVB Foundation | Joshua Bakers Story,

Joshua was born on 27th November 2005, weighing 6lb 3oz. When he was 1 week old we had noticed he wasn't feeding very well, and seemed to sleep all of the time. The midwife, health visitor and people we knew said this was normal and that he was probably a lazy baby!

On 13th December 2005 josh was 2 weeks old and was still very sleepy. His health visitor came to see him and as I was undressing him to be weighed the colour drained from him. His whole body went a bluish/grey colour. I took him to our doctors who explained that Joshua could be very poorly, but not to worry as it could quite easily be a chest infection; but he sent me straight to our local hospital: Russell's Hall, to get the little guy checked out. There, the paediatric consultant explained to Lee (josh's dad) and myself that they suspected Josh's heart was failing and as they did not have the specialised equipment here josh had to be transferred to Leicester's Glenfields hospital, for an Echocardiograph scan on his heart to see what the problem was.

We went in the ambulance with josh to go to Leicester but just 10 minutes into the journey he stopped breathing. Once the doctor had stabilised him we had to return to Russell's hall as they didn't think josh would make the journey. Once there, josh was put on a ventilator to help him breath and transferred to Leicester by ambulance in a special little incubator. We had to stay behind as it was not safe to travel in the ambulance or follow, as it would be going at high speeds with the lights flashing and the sirens blaring. It was the longest 2 hours of our lives, waiting for the doctor to call and tell us what was happening. When he did call our worst fears were realised. Our little boy's heart was failing and he would need an operation the following day to sort out the 'plumbing' in his heart. We raced up to Glenfields to be with our little boy. We had to leave josh's big sister Chloe at home as it wasn't fair to take her with us. (she was only 14 months old at the time and it broke our hearts to leave her, but we knew it was for the best as we needed to be their for josh and we knew she was safe and well loved at home with our families). We had no idea where the hospital was and we were in a total state so my brother, his wife and young son, my dad and his partner (bless them) drove in their cars to the hospital and we followed behind.

We got to Glenfields at 2.30am on 14th December 2005 (lees birthday). Josh was on paediatric intensive care ward (P.I.C.U) and he was covered in wires and had tubes that seemed to be everywhere. He was linked up to all kinds of monitors and machines and was still on his ventilator as he was too weak to breath for himself. He was colourless and looked so tiny and helpless. The doctor explained to us that josh had a very complex heart condition: 'transposition of the great arteries' (arteries the wrong way around), 'pulmonary atresia' (pulmonary artery blocked) and 'ventricular septal defect' (hole in the heart). Oxygen had only been able to pass around Josh's heart by 2 little ducts that are present in babies when in the womb and they allow oxygen to pass from the placenta to the unborn baby bypassing the lungs. These ducts close naturally when the baby is born as the lungs take over the placentas job of collecting oxygen. So when Josh's ducts began to close oxygen could no longer flow properly through the heart in order to be passed around the body. He was in a critical but stable condition and desperately needed his operation.

Josh had his operation later that day on 14th December and his daddy had the best birthday present ever when the surgeons told us it had been a success and although he still had a long way to go he was going to be alright. After the operation it took josh a long time to come off the ventilator as he was still so weak. He finally came off it on 23rd December, just before Christmas, but on Christmas Eve (while we had Chloe with us at the hospital) Josh's left lung collapsed, and he was nearly put back on the ventilator. We had been so looking forward to having Chloe with us for Christmas and then for this to happen. But we saw her open her presents and then had made the heartbreaking decision to have her taken home. With Josh being so poorly we needed to be with him and it just wasn't safe for Chloe to be in the intensive care unit and at least at home she was with family and able to run around and have fun, we knew it was for the best.

We were transferred back to Glenfields hospital onto their children's ward on 14th January 2006, but josh started to slowly deteriorate and the doctors told us that the drug to keep the special duct open hadn't worked and that the duct had closed causing josh to struggle again. So on 19th January 2006 Josh had his 2nd operation. This time though there was such a difference in him, just 2 days after his operation he was off the ventilator and the day after that he was breathing unaided and feeding for himself (out of a bottle). No-one could believe the difference in him. He was like a new baby. On 24th January 2006 the doctors explained to us that Joshua would need further operations as he grows up to help correct the problems with is heart, but as he was doing so well they allowed us to bring him home to his big sister. It was a day we would NEVER imagine would come; it was like all our Christmas'es had come altogether!

Josh is still slightly bluish in colour and we have to be careful that if he does catch a cold and it goes onto his chest, he ends up back in hospital on oxygen while he gets better. He has to have special injections to immunise him against catching a cold during the winter months and has to go back to Glenfields for regular check ups, he still gets tired very easily, but he is doing extremely well.

On 6th august 2006 josh was at Glenfields for 3 days to have exploratory surgery to help his doctors plan the next operation. All of the nurses and doctors remembered him but they could not believe how well he is doing and how much he changed. They are so pleased with the progress he has made and is making. They said he was their star patient. People can't believe that even after everything he has been through he is such a happy baby who always has a smile for everyone. Our little Chloe is so happy to have her little brother back at home to where he belongs!!!

Glenfields is supported by a charity called 'heart link'. It was set up and is run by families of people who have been treated at Glenfields hospital. They help to provide much needed help and support to patients and their families (they helped us so much while we were there, simply just by being there for us to talk to), they also provide funding for much needed specialist equipment for the hospital. At the moment they are trying to raise £60.000 for a new 4D scanner that will be used to diagnose many different conditions, including Joshua's heart problems. It will make such a difference to the hospital and their patients. Your donations will make such a difference to so many young and old and every penny will really help!!
We can't thank Glenfields enough for what they have done for us and josh and also what they are continuing to do. Thanks to them our little boy is at home with his family and us all together.

Josh is such a wonderful and loving little boy and we are truly blessed to have him. We are going to organise a number of sponsored events through out the year with the help of our great friends Janet and Steve Woodall, they have set up a charity in memory of their beloved granddaughter Genie who sadly died in 2005 aged just three, and is dearly missed by us all. They are going to help us to raise some money for Heart Link. It may not be much but we hope it will go a little way to showing how grateful we are, for all Glenfields have done for our family.
Thank you once again Becki, Lee, Chloe, Mia and especially Joshua Baker xxxxxxxxx

Since Joshua's story was written he has been back to Glenfields on a number of occasions for different operations. He has had 4 cardiac catheter procedures. For these he only has to be in hospital for around 3 days. He has also had to have further open heart operations. As Josh's condition is complex he will never be cured but there is quite a lot that can be done to improve his quality of life.

On 15th October 2006 Josh was in Glenfields for nearly 3 weeks after he had an operation to re-construct his pulmonary artery. After he'd had his operation he developed a chest infection and his left lung collapsed. He was kept on intensive care on a ventilator so his chest could heal. It was touch and go for a while but our little guy fought his way back and before we knew it he was rearing to get home to his big sister Chloe. His condition improved a little after the operation, but he was still very blue and became tired very easily. His next operation was on the 10th April 2007, this time for a procedure called a Rastelli, which we hoped if it went well would greatly improve his quality of life. Unfortunately though the operation didn't go as we hoped, and for the next five days the intensive care nurses struggled to stabilise him. His lung arteries hadn't developed as well as we had hoped, and were struggling to cope with the new flow of blood through them. His lungs were slowly now starting to flood. On Friday 13th April 2007 he was rushed back into theatre so his surgeon Mr Firmin could stem the flow of blood and stop his lungs from flooding. He came to our rescue once again and the procedure went well, but because of the complication we didn't really see much improvement in his condition. His SATS didn't improve very much so he was still blue and still got tired easily. He spent three and a half weeks in hospital. After all he had been through he was still determined to get home to his big sister. I found it especially hard this time as I was 6 months pregnant and was more emotional than ever.

Amazingly Josh was off his ventilator after just 1 day. He was eating and eager to play even though he was still very weak after just 2 days. He was driving us MAD to get home to his sisters by day 4. After just 5 days he was back home, looking still a little blue but so healthy, and happier than we have ever known him. He had so much energy to. We can't believe the difference in our little guy, he really has had a new lease of life. Although he still needs further surgery and probably will do through his life we feel comforted knowing he will be cared for by such wonderfully caring and talented "SPECIAL" people at Glenfields. We will be eternally grateful to everyone there for everything they did for Joshua, as without them he would not be here with us today. And to the nurses and all at Heart link and liaison nurses who were there to support us, and help us through such a dark time. We are especially grateful to our families and close friends who not only supported us but looked after our little girls Chloe and Mia, and other parents we met during Joshua's stay's at Glenfields. They helped us to "MAKE THE BAD TIMES BEARABLE", they were there for us, to support us and even make us laugh when we most needed it, even though they too were going through the agony of having a poorly child. For this we are forever grateful and we will never forget them.

Our little star managed to pull through, but needed extra oxygen via a nasal ventilator to help him breath. Josh slowly started to get stronger and was transferred to Leicester's royal infirmary on new years eve, while he put on weight and gained strength. The doctors there told us that because of his condition, the fact that he needed a special drug taken hourly to keep one of the ducts open in his heart he could not breath unaided and that he needed a tube in his tummy to feed him and may be like that for a year in hospital until he could have a 2nd operation to increase the air flow around his heart. We were devastated, all we could think about was that josh would be in hospital in Leicester and Chloe was at home missing her mommy, daddy and new baby brother, we just didn't know where to turn or what to do, we felt completely torn, but over the next few days our little josh surprised all his doctors by gaining strength and putting on weight. Within 2 weeks he was off the nasal ventilator and feeding for himself.

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In July we had another little girl Mia Anna lee. Joshua and Chloe both loved their little sister so much and thankfully she was completely healthy. Josh would sit and hold her hand and sing to her all of the time. So when he was called to go into hospital again he was extremely upset. He missed his sisters so much but worse of all he was starting to recognise where he was and obviously remembered some of what he had been through. He got so upset and we couldn't do much to console him. We were partly relieved he was going to have this next operation as his condition had worsened quite a lot as he'd grown over the past few months. His SATS were very low (around 50-55%), so we knew how much he needed it. But we were also terrified at the thought of our little man having to go through another massive operation AGAIN! We just preyed that this operation would go well and he would feel some benefit from having it done. Once again during the operation they were met by complications. Josh's main arteries from his heart to his lungs hadn't developed enough and had also narrowed, so Mr Firmin couldn't do the exact planned operation. However anticipated this and had a PLAN B! The alternative operation was a great success. And although it meant he would require more surgery than they had planned he would potentially be operation free for the next 4-5 years. Apart from the odd catheters and minor op's.