Jakes Story

Here’s our story of our amazing boy jake

Jake was born on the 23rd of May 2007 at the royal Glamorgan hospital, soon as he was born he was rushed straight into intensive care as he was struggling to breethe on his own. He then spent 2 weeks in special baby care unit in Cardiff hospital, he had all the doctors confused with the problem he had, eventually we were told that both his heart valves were leaking and the back pressure was causing his heart to swell, so the plan was to get him on a treatment of drugs and send him home and continue with check ups.

 Jake was home for just 8 weeks when they decided for him to go in for a week trail on a better treatment the week was going fine until the last night when both of his valves got worse and caused him to crash within minutes the room was filled with doctors and nurse’s they were bagging and trying to get a ventilation tube in him it felt like it went on for ages and the way it was going we thought that was it and the doc’s was thinking the same but they got him ventilated and into intensive care. We were told that if that happened again he probably wont make it and that was when were thought that was it for him.

 He spent a month on life support in Cardiff then we had a chance to go to Bristol and have the both valves repaired but we wasn’t sure if he was big and strong enough to make it through but the only other option was to turn of the machine and that wasn’t going to happen. He was in intensive care in Bristol for a month before he went for the op due to the infections he caught we sat down with the surgeon and he explained that he had a 50/50 chance of pulling through the opp took 8 hours and he came out looking a lot better, no more swollen stomach off the back pressure of the heart, the surgeon said they was still leaking slightly but he thought it was a successful opp and hoping it would last a good few years to give him time to get bigger and stronger. A month later he was taken back to Cardiff intensive care and within 2 weeks he started to struggle to breath, x-rays showed that because his heart went bigger it crushed 1 of his lungs leaving him only 1 good lung so they decided he needed a trackostamy fitted to help him breath, 2 days after that jake crashed and needed CPR we were then took into the quite room with the consultants on intensive care and they told us that cause there is so many things wrong with Jake there is nothing much more they can do and would be time to turn off the machine and say goodbye to our boy we refused to do it and for the next 4 days we were taken in the room and told the same thing but it wasn’t happening.

A few days later he was given another life line from Bristol another heart opp.

As soon as we got to Bristol we were put in a room at the back which we knew from previous visit that was a bad thing, the consultant took us to one side and said that he thinks jake wouldn’t survive the opp and if he did he wouldn’t recover from it , we couldn’t give up on him know and decided to go for it and if he didn’t make it we knew we gave him a chance, the surgeon who done his 1st opp wanted to talk to us and said he’s willing to perform the opp of replacing 1 valve with a mechanical one and doing a repair on the other he gave jake up to 15-20% of pulling through which was pretty grim but he was keen on proceeding with it so jake went into theatre for roughly 7 hours we didn’t know what to do with ourselves and it felt a lot longer, eventually jake was wheeled out and was told the next 24hours was critical. The surgeon came to us and said he was happy with the opp and soon as he replaced the worse valve his heart shrunk down a lot which gave his lungs more room to expand.

Within 3 weeks we were back in Cardiff which was a big surprise for them as they thought they wouldn’t see jake again.

Jake spent 4 weeks in intensive care and came down with an infection which was suspected meningitis but test came back clear after jake got through that he was taken of intensive care and put onto high dependence ward which his stay was only 1 week and transferred to TCU ward where he stayed for another 3 months and then was finally sent home.

Since then jake has had his tracky removed but still not feeding normal and everyday is up and down and will need further heart operations throughout his life but if it wasn’t for the surgeon in Bristol telling us what we wanted to hear and giving us total confidence in him who knows what would have happened. There’s loads of things which we’ve missed out but it was a long and hard 9 months and they were the things that stuck out the most and that is the story of our amazing boy jake.