He died in 1993 at the age of eight weeks, following surgery to correct a heart defect. We were told a post mortem was essential, which we accepted; we did not sign any authority for a post mortem or for organs to be retained.
When we learned his heart and "other organs" had been retained, our reaction was shock, anger and disbelief. We made an effort to keep calm, for the sake of our children, aged eight and five. We even tried to look at the situation positively: if the organs had proved useful, we would possibly leave them with the hospital. If they had had the decency to ask at the time whether we would donate Gareth's heart, we might well have agreed, because we appreciate that advances in medicine depend on organs for research and training.
On 15 November, we telephoned the hospital for written confirmation of: 1) the options available to us; 2) the organs which had been retained; 3) what the organs had been used for.
Alder Hey wrote back the next day, but only answered the first point. We wrote back , requesting answers to the other two questions. Last Thursday we received a reply confirming that Gareth's heart and lungs had been retained, but again ignoring our third question. We made the decision that day to have our son's organs buried with him.
Why would Alder Hey not answer our question? Are we to believe that our son's organs have been languishing in a glass jar for over six years, or are they so afraid of litigation that they will not admit in writing to having used the organs?
We telephoned Alder Hey on Monday to discuss funeral arrangements, and again raised the question of what happened to Gareth's organs. Their excuse for not answering our question was that they did not have a definite answer. Some hearts may have been used for teaching purposes, but they are unable to give specific details. Why could they not have confirmed this in writing?
Whatever the truth, we are now facing the prospect of re-opening our son's grave. No parent should have to bury their child twice.
What lessons should the health trusts and medical profession learn? Treat all relatives and patients as intelligent adults, with respect. Admit errors and learn from them; a no-fault compensation scheme would help all, including the doctors who treat every question as a possible precursor to legal action. Do not rely on internal inquiries; make them as public as possible from the beginning, as the public is losing trust in an institution that does good work most of the time.