Jayden's CHD foundation

I have created Jayden's CHD foundation as a way to give back to the CHAIRTY and hospital that saved my little boys life. He is 15 months old and had 6 operations and due another in just 3 months time as he has a serious heart condition. Jayden's story, this is the note that I wrote for CHD week please take the time to read this... This took me a long time to write it let alone to share it with everyone on facebook, but awareness needs to be raised... I know most of you on here only know of Jayden's operations and on going health, however because it is CHD I have decided I shall tell Jaydens story so you can all try to understand what Jayden has and what Jayden has been through in 14 months of his life! So... here goes! I had a routine 12 week scan, which actually revealed I was 15 weeks and 3 days! bit of a shock, but nothing I couldn't handle! Myself and mum were sat in Treliske's Princess Alexandra Ward joking about if there was twins or triplets in my tummy! The first scan went fine, everything was thought to have been ok with bump (how we knew Jayden at the time) Then the 20 week scan date came through in the post, getting all excited realising I was going to know if I was having a son or daughter I was over the moon! The day of his 20 week scan I was so excited; I couldn't keep still! We went into Penzance hospital, the first half of the scan went perfectly, she told me I was having a boy, I noticed the scan was taking longer than the first one so I started asking her questions like 'is everything ok' 'what are you checking for' when she stopped and looked at me I knew something wasn't right; I had a lump in my throat, her words to me were" I am sending you back to Treliske for an emergency scan at 9am tomorrow, something isn't right but I need to double check to be sure, your baby may have a heart problem' I didn't know how to react, I was in shock, I cried and then stopped. I was dredding the next scan... The next day we went up for my scan, mum was with me of corse, this is when my worst fears were confirmed, he has infact have a serious heart problem. The gentleman doing my scan asked if I had a name for him, instantly I said Jayden. He then went on to tell me what he could see. He told me that Jayden's heart valves are on the wrong side and from what he could see they were different sizes themselves, he has a hole in his heart and without surgery in the first few days of his life he wouldn't survive! It was at this point I was offered an abortion... I looked at mum, I didn't even have to tell her anything, she instantly knew I was keeping my boy! From that point on we had scans every 6 weeks during the remaining of my pregnancy with Dr.Temetski from Bristol. We had to go to Bristol for a scan, to meet the team and the surgeons, I knew I would have to have him in Bristol, where the best medical teams are for children! It was at the scan we were told that his heart had grown and I should be able to bring him home before surgery! Myself and mum didn't know whether to laugh or cry! it was such an amazing experaince for me, I felt amazing! The rest of my scans went perfectly and I was so excited to finally meet my little man! So at 37 weeks, I was taken up to Bristol's St Michael's hospital and I was induced, It started on the Monday, and he was born on the Friday, he was born using only gas and air at 1;09am on the 12th April 2013! Seconds after he was born I had a cuddle and he was wisked away, I didn't know what was going on untill mum explained to me that he was taken to NICU! After I was ok and the midwife said I could leave I went straight up to see Jayden! He was so small, I couldn't believe it! I couldn't believe that this gorgeous little man was inside me for 37 weeks and 5 days coping with his heart condition doing perfectly! I was terrifed to pick him up, he weighed a tiny 6lb 5oz! Myself and mum stayed next to Jayden's bed for hours, finally crawled into bed upstairs on the ward where we slept for maybe 5 hours and then we were awake again! Jayden coped perfectly on his own for 2 days without any drugs, any operations or anything! His sats did start to drop dramatically that's when they put Jay on caffine! After a few days his caffine stopped working so they put him on prostine! This was a drug to keep his heart valves open and to keep him alive! The doctors did their normal rounds and then decided that Jay needed his operation at 5 days old to keep him alive! this broke me. The first operation consent paper is always the scariest! With any Cardiac surgery there is a chance they may not come out. Jaydens first operation was a Septostomy, This is where they put a balloon type thing into his heart valve that was closing, blow it up and pull it thru! Once he was out the surgeon told me clearly that it didn't work and he would need another one ASAP! so Jaydens 2nd operation happened a few days later, this is when they put a STENT into his heart valve. A STENT is a plastic tube that is no more than a few mm's long that is placed into his heart valve, he has this and everything was ok! He was then realeased home and a few weeks later we discovered on his Cardiac Checkup that tissue had actually grown into the stent, where his body was trying to make the stent part of Jayden, So we went back to Bristol to undergo yet another operation, which was to remove the tissue from Jaydens stent and stretch the stent, This worked fine but the surgeons still were not 100% with Jay. They wanted to put another stent in on the other side of his heart to make sure that the tissue situation wouldn't happen again. so they did that too. Again tissue grew into that one so they took the tissue out and then the surgeon came to talk to me. He explained that without this next operation Jay wouldnt survive, Yet the survial rates were lower than his past operations! So before they did this they wanted to go a Cardiac Catherisation which is basically they put a camera in his heart to see what is going on. He then decided that it had to go ahead ASAP! so Jay went down for his biggest operation yet, They took the STENT out on the left side of his heart and replaced it with a BT SHUNT which is a little metal cage stronger than a stent that allows more blood flow to the heart! Jayden was down for the operation for 4 hours! This is why he was a scar on his side! (which you can hardly see now) Back in ICU (Intensive Care Unit) Jay has chesy chains, lines going everywhere, he was on a ventilator and on morphine to keep him asleep! After a few hours he tried to wake up, I was sat next to his bedside talking to him, and all of a sudden I felt a tug on my finger, I was sat watching him twitch his fingers grabbing hold of my hand! It was the most beautiful thing I've ever seen! After this he was released back onto the ward where he was only there for a few days and we were realeased home! As you can tell, myself and Jayden have been through so much together, what matters is my boys. health. Since having Jayden I have realised who my true friends are, I know who genuinly cares about Jayden! Thank you for reading this