Jake's Story
The 13th of December 2006 my 3rd and 4th children entered my world ~Aylah Ruby and Jake Darby John ~, two days later we all went home with a clean bill of health and they were able to meet their siblings, Tamika 11 and Lillie 13 months. Home life became a little bit noisier and busier.
January the 17th 2007 brought my world to a grinding halt; I'd taken Aylah and Jake to the doctors for a poo problem and asked if he could give them a check up while we were here. Aylah, my large and lumpy little lady was given the thumbs up; it was then Jake's turn. The doctor was just taking far too long, the silence was deafening, there was something wrong with my son, and an uneasy feeling took over. X-rays were ordered and Jake was prioritised and seen to within minutes, I thought in my 'worldly knowledge' as a mum that it was his lungs that I was looking at on the x-ray, unfortunately it was his extremely enlarged heart, it literally took up his entire chest cavity.
A phone call was made by our doctor to the major heart/lung hospital in Queensland and they were advised that Jake was on his way. I quickly organised for the 3 girls to be cared for while my father and I drove Jake to Brisbane. Jake was admitted to the High Dependency Unit (HDU) at the hospital and after a quick external examination the doctors hoped it was 'just' a hole in his heart. 'Great, good, they can fix those things now day' was my thought. Unfortunately Jake's hole in his heart turned out to be Dilated Cardiomyopathy (DCM), an incurable disease of the heart muscle, which is very rare in infants, unpredictable and can appear at any stage in anyone's life regardless of age, gender and race.
Jake had moderate heart failure due to the DCM but was responding well to the medication he was now on, he was transferred to the ward after 6 days in the HDU, where I discussed his future and the limitations he might face due to DCM. They were very confident that he would lead a relatively normal life, his diet would have to watched, he could play sports but would never run marathons and he had to take care when coming into contact with people who aren't well, the common cold could literally kill him at his young age.
For a very short week life had returned to normal, 6 days after discharge Jake started to show signs that all was not well, his chest was again recessing, he was struggling to have a bottle and was re-admitted for what would be his final time. He was now suffering severe heart failure. He again endured daily bloods being taken, MRI's, Echocardiograms but now the metabolic doctors were involved and were trying to find the cause of his DCM via his blood tests. His little body had endured so much, his hands and feet were bruised because of the daily moving of the cannula, he was hungry and stressed due to being nil by mouth.
Saturday the 3rd of February at 3.30pm my little boy's body just couldn't cope, it all became too much for him and he began going into cardiac arrest in my arms. Doctors appeared from everywhere, he was surrounded by staff, they wanted to cut his clothes off him, the crash cart was brought in but the reality of the situation still hadn't really sunk in, Aylah and I just kept moving further and further out of their way.
Jake was rushed to IUC and I was asked if there was anyone I need to call. I started falling apart, I have no idea what I did for the 3 hours from when he was taken to ICU and when I was collected to go and see him. I was led into ICU and that is the moment I was told 'I will tell you this before we go in, your baby has passed away'.
Words that I will never forget, words that left me numb, words that I just couldn't understand. She helped me to the cubicle where he was...this IS true, this IS happening. His tiny little body was so pale, so lifeless and so cold...he was gone, I had lost him forever. He would never open his eyes again, I would never see him grow to be a wonderful young man, and I would never experience a lifetime of Jake.
We had a small but beautiful service for Jake, he was transported to his grave site in the cab of his poppy's truck, it was a proud yet so heartbreaking moment - this being his first and final ride.
Not a day goes by that my Jake is not thought of or spoken about, my heart aches for him, the tears are always there and sometimes they flow uncontrollably. Jake lives on in my family and friends and as his proud mum I will not let his short life be forgotten - he existed, be it for 52 short days but he was still here...
