In the spirit of ‘Dying Matters’ week, I feel compelled to open up about my experience in the Cardiology Ward of the Queen Elizabeth University Hospital in Glasgow.
In open heart surgery, the child is administered a general anaesthesia by specialists to guarantee that they are asleep and will not experience pain. During the surgical phase, an incision is made through the sternum/breastbone which is held open with clamps.
As specialists attempt to repair the heart, tubes are temporarily inserted in various locations in the cardiac region, to divert and circulate the blood through the body whilst also maintaining it at body temperature – essentially this acts as a temporary heart.
The mechanism allows for the heart to stop beating for the duration of the surgery. This gives the heart the opportunity to regenerate and repair cardiac muscle, the valves and the surrounding blood vessels.
Once surgery is complete, the machine is removed and the heart is started again. The concept of the operation itself suspends an individual neither in a state of living or deceased, but in a condition of intermediacy.
At the turn of this year I became involved with a family who were coming to terms with the reality of their youngest son, Tommy Simpson, being diagnosed with a heart disease. Each year, 1 in 145 children are born with this condition with some developing it at a later stage in childhood.
The disease often leads to further impairments, Tommy needs to be attached to oxygen tanks to assist his breathing as the disease effects his respiratory system. He also struggles to hear and seeks stimulation and communication through visual aids.
An iPad keeps Tommy entertained while he spends long hours in the hospital awaiting treatment.
Tommy had been on the waiting list for a heart transplant for a while but during one of my visits to the ward, I was informed that he had been rejected from receiving the transplant. This meant that the next stage of transition would be palliative care. I spent time with his parents alone as they expressed their exhaustion from having to travel between hospitals from their home while raising their older son, who they had not informed of the news yet.
I spent time with Jake, Tommy’s older brother in the hospital’s ’12 zone’ fun area. He maintains an admirably positive vibe while being aware of the critical nature of his younger brother’s condition.
Tommy is currently moving between Robin House Hospice and a hospital closer to home as the family progresses into the next phase of their journey. The family and nurses at the hospital exclaimed that people assume cardiac problems and hospice life is generally for the older generation with young bodies perceivably immune to conditions such as Tommy’s. My intention is to break these assumptions, showing the fragility of childhood and how a terminal illness can be lived out in relative harmony with the patient’s family and hospital care.
Update – 10/6/17
Tommy has sadly passed away peacefully at Robin House Hospice. Rest in Peace to a special young man who in the short time I spent with taught me how to embrace and value the simpler things in life that myself and many take for granted.