Lauren Simpson & Jason Edgar, Billingham
Heres Jaydens story, i was 19 pregnant with my first child, how amazing?! Im going to be a mammy, although turned out sooner than planned. Spontaneous labour began!
Jayden John Edgar entered the world 1st January 2014 13 weeks early (27+2 gestation) he was tiny, yet so so perfect! A tiny 2lb 10oz in weight, cute right? Yet so dangerous! He was placed on morphine to help with bruising brought on during a long hard 14.5 hour labour, he was placed on a ventilator the moment he was born to help keep oxygen levels steady, he looked like a doll! He done amazing, family, friends and nurses all positive hed be home in no time, he couldnt get enough of his breast milk all was going smoothly, he went onto cpap then the 2 little wires, awesome!! Less than 24 hours later he couldnt stabilise his oxygen levels on his own so he went back onto his ventilator, after this turn it went from bad to worse, only 8 days old they stopped his breast milk due to suspected NEC (bowel rot), he had a canular in each foot, his right hand and his head, a longline in his left arm going straight to his heart, he was covered in wires!
My poor little boy, laid there so helpless and all i could do was watch as they pumped all these drugs into him! He still wasnt getting better but why? Yet more tests came and bad news followed! Bloods were taken and line septicemia and staphylococcus were diagnosed, common infection given the intensity of his illnesses, they then proceeded with lumbar puncture, confirmed meningitis! Disaster 😔 then came the worst news, grade 2 interventricular brain haemorrage! What?! My innocent little boy is really that bad!! There was still nothing i could do and me and his dad still hadnt had our first cuddle! His kidneys then failed which caused bruising and swelling of his whole body, luckily we had some good news after 48 hours they were getting back on track and slowly starting to work again!
At 20 days old me and his daddy finally had our first hold, we got to kiss, cuddle and touch our little boy properly! Our first feeling of real parenthood! 3 hours we held him for, spoke to him and just showed him all the love we had! Less than 24 hours later his kidneys had failed, followed by his liver! Really? Hes getting worse again! He swelled more, he got calcification build up in all his muscles including his heart, this needed to be sorted asap before heart failure set in! He got placed on a high intense ocilator (300-600 breaths a minute) his whole body just vibrated!
At 30 days old once he had stabilised and went back onto the lower ventilator again we got referred to the RVI (Royal Victoria Infirmary, Newcastle) specialists in Jaydens case, could this finally be a turn around? I felt like they gave up on him straight away.. ‘the best thing you could think about mam and dad is turning these machines off’ .. your asking me to let my baby die?! NO no way, i was going to fight this! He never got any better, so on day 36 we came back to North Tees, an amazing consultant came to see him and stood by us and said we had done the right thing not turning his machines off as if he had even a 1% chance hed fight with us! Finally, someone whos on our side! He and we agreed to do an eeg over 48 hours, the results day came and what we were told crushed us.. ‘im afraid the only brain activity is seizure activity which means hed never live without his machines and hed be in a vegetable state for the rest of his life’ but thats not a life is it?
We agreed, now was time, we had to sign a DNR (do not resusitate) he was on paliative care, nothing more could be done, we were going to loose our baby, the next 2 days the family came to say their goodbyes, some to say their first hello! I got to dress my little boy in a beautiful white and blue baby grow, his first time being dressed and he handled it amazing, i got another hold! His grandparents got their first cuddle, their first time seeing him out of the incubator!
On sunday 9th February at 6.15, 40 days old i held my son as the nurses turned his monitor off, and 1 by 1 removed each tube from his face, wow how beautiful my baby was without them all! Me and his dad spoke to him for the next 12 minutes before we heard his last breath being took! He fought everything he had inside of him to beat this, and we tried to help fight with him, but his brain haemorrage got worse and in the end was a major grade 4 (the worst there is) he beat all the infections! He fell asleep totally infection free, so his fight did pay off! He had liver and kidney failure, he was deaf, blind and 90% chance of cerabal palsy!
The doctors and nurses still agree we made the right choice, but to us, his mam and dad, we didnt feel like that, he fought for us and it looked like we gave up on him, Jayden was the most beautiful, angel ive ever met, and us as a family are sooo sooo proud that hes our son, hes our amazing little boy who will never ever be forgotten, we will keep his memory alive asif he never fell asleep for that last time!
