Henry's story is like so many we have come to learn about. One of tragedy, heartache and loss, paired with extraordinary pride and value of the child he was and the contribution he has made, not only to individual transplant recipients, but to communities of people.
Henry was a thriving, healthy child; loving, warm and affectionate. He loved to give a cuddle and watch the joy on the face of someone receiving a gift he had made them, a necklace, a picture, an object of paper, craft items or stickers. Henry was always a big boy for his age; tall and strong with astonishingly beautiful strawberry blonde hair. He was used to being noticed. People were drawn to him. He was kind and patient and co-operative. He was happy and gained joy from life, food, books, playing games, and people's company. He loved being around people. He idolised his older brother and sister. He looked forward to starting school. He was 4 years old when a fever lead to a hospital stay. His health deteriorated quickly. Finally, it was discovered to be his lungs. Within 24 hours he was transferred to a larger hospital with a paediatric ICU. Four days later he was intubated and transferred again to a larger city hospital. Henry then remained on heart lung support for 2 weeks.
We desperately hoped for Henry to receive a lung transplant which we knew would ultimately mean a horrific scenario occurring to another child so that ours may live. Henry’s life had become too fragile for him to wait for a transplant even if lungs were to become available. We were never asked about organ donation. We seemed to lead the discussion. We could not see the sense in watching our child die in vain. We decided that no parent should ever experience this loss and if Henry could help another family avoid the pain we were experiencing then he would donate his organs. Henry was bright, communicating and aware right up until he passed away.
There is nothing more horrific, no greater torture, than for a parent to hold their child as he dies. The knowledge that Henry's death has resulted in a better life for others brings a sense of comfort and strength.