Jonah's mum Edel tells his story from palliative care to a 5 year old with an innate ability to wrap people around his little finger...Jonah Murphy is a wonderful 5 year old boy with lots of special talents. He is a warrior and has fought an up-hill battle to be where he is today. Though he is non-verbal he can still communicate his needs, and more importantly to Jonah – his wants and disapproval!
Jonah was born in 2015 with a rare heart defect which meant only half of his heart had developed. At just 4 days old Jonah underwent his first heart surgery in Crumlin Children's Hospital. After 5 weeks in ICU in hospital Jonah came home to Galway to continue his recovery.
At 8 weeks old, disaster struck when Jonah suffered a cardiac arrest. Huge effort were made to resuscitate him and he was rushed back to the ICU he had left only weeks previously. Jonah survived but was left with brain stem injury and cerebral palsy as a result of lack of oxygen to the brain. The following 6 months were so tough for us and for Jonah.
Jonah had lost basic functions and automatic reflexes - he could no longer blink or swallow and doctors weren’t sure if he would be able to breath by himself. He needed to be suctioned regularly as his own saliva was a constant aspiration threat. He needed a new way to be fed so a PEG tube was inserted into his tummy. Weeks and months passed without the return of these primary reflexes and by this stage Jonah’s heart needed more surgery.
But the Neurology Team blocked the surgery on ethical grounds citing poor quality of life. We were devastated as without this heart surgery, he was going to die. A second opinion but tests indicated that Jonah would be quadriplegic and prone to chest infections and pneumonias which translated to a life in and out of ICU.
The Palliative Care Team gently guided us into the next stage for Jonah. As parents we wanted to bring Jonah home to Galway to live out the remainder of his days surrounded by the love of family and friends. Under the expert guidance of The Jack and Jill Foundation combined with a Homecare Package from the HSE, Jonah made his angel trip home in The BUMBLEance in early Spring 2016.
Jonah’s care needs were intensive and exhausting. He needed 24-hour around the clock care - nurses by night and team mom & dad by day. We were told he was unlikely to make it to his first birthday in July. Every day was precious and couldn’t be taken for granted but it was a gruelling schedule of suctioning, meds, peg-venting, pump feeds and physio exercises to stretch his muscles. Slowly we began to see little glimmers of light in his eyes, or a small purse of his lips as if trying to smile. These were fleeting moments as he suffered a lot of discomfort and his sleep was limited to naps of 20 minutes or so every few hours, even throughout the night. But we were by his side all the time loving and caring for him.
Then one day in early April, a miracle was to unfold. Each day Jonah would be propped up in an upright sitting position surrounded by pillows and cushions. He regularly flopped over onto the pillows but this day we noticed a deliberate attempt to hold himself sitting. We watched him closely over the next few days and sure enough he was making efforts to sit. We had been told that he would not be capable of independent movement and here he was defying the odds stacked. We immediately arranged to take him to Temple Street Hospital for a neurology review in the hope they would now consider him a candidate for surgery. Shortly after, he had emergency life-saving heart surgery in Crumlin. It was a whirlwind and as Jonah lay recovering in ICU yet again we knew we had a warrior on our hands. The future was unclear and uncharted but we were so grateful to be given a chance at a future with our little superhero.
Today, Jonah continues to amaze us and makes strides and reaches milestones according to his own timeline. He began to crawl at 18 months old and took his first steps for his 4th birthday. We await with excitement his first words and hope they will come when he is good and ready. With an added diagnosis of Autism and still very limited sleep, along with his heart condition and the brain stem injury, Jonah faces many challenges and hurdles in everyday life - but he powers on and we do our best to find ways to meet his needs and adapt the world to suit him.