29 September 2022: Witnesses related to Alder Hay Children's Hospital - A

The fourth Panel was not a Panel, but a single witness who would be followed by another witness. She was a parent whose children had been virally infected at Alder Hay Children’s Hospital. This is perhaps one of the most specific topics to be investigated during the Panel sessions, and one of the most heart-rending. Upon taking her seat at the front, the witness was immediately supported by Lead Counsel to the Inquiry since she was clearly very emotionally affected by the occasion. Counsel personally made sure she was settled, had everything that she might need close at hand, and no doubt gave her reassurance and encouragement. Meaning no disrespect whatsoever, it appears that the years of pain, anguish, and deep suffering were etched onto the face of this beautiful, gracious, loving mother from Liverpool. (Note: the testimony of this witness contained some very troubling information which could be upsetting to review, even in a simple summary.)

Of her three sons, two had haemophilia. The third son was in attendance at the Inquiry in support of his mother. She described them as “gorgeous boys”, like any mother would say, she said. They were great boys, they played in the garden, and were just like typical boys. At Alder Hay the boys received factor products. The witness could not remember or had not been able to find out about whether they were previously treated with cryoprecipitate. She just assumed the hospital were giving her children the safest possible medication. Documents included records of treatment with a mix of commercial (Armour) and UK (Elstree) products from age 2 years old. Already, the sheets demonstrate laxity in completing the sheets clearly and accurately. Counsel highlighted the lack of a changeover to safer products at the point when national events had taken place to recommend not using factor concentrates on children.

The witness had not been told of any risks associated with concentrates, either before or after the advice of risks in treatment was circulated among clinicians. The main treating clinician was a Dr Martin. The treatment of children at Alder Hay was overseen by another hospital. When treatment was administered, there were always doctors around who could have spoken with her, but they didn’t. When heat-treated products began to be administered, that may have been mentioned, but not why it was noteworthy. The witness thought she had been told that Scotland had started using such products earlier, but that is really all.

Blood tests were carried out which the witness thought were just part of regular monitoring. A letter soon thereafter was received telling her that both boys had tested positive for HTLV-III antibodies, being the virus that causes AIDS. At first she did not know what it meant but had images in her mind of tombstones from the TV adverts. She started to feel faint. Her parents happened to be in the home, and she kept asking them what it meant. The boys were aged 8 and 5 years old, they had been tested without their mother knowing, and the news of their AIDS status arrived by letter.

A group meeting was called where the parents were told not to bring the children up to the hospital if they had coughs and colds. Other information was given, but the witness was so stunned by what they had first said that she could not remember anything else. Counsel established that the doctor never did sit down with the witness to explain what had happened and why. Given that the boys had been infected with something as deadly as AIDS, there had not been any support offered, or information, or help of any kind. Reports on the cases of the boys had later been prepared by Prof Savidge and Dr Ludlum. These confirmed the frequent use of commercial factor concentrate and unheated treatment at Alder Hay when safer products were available and other hospitals were returning the un-heat-treated stuff to suppliers. Prof Savidge confirmed the complete lack of treatment with single donor pool cryoprecipitate when it was happening elsewhere as standard for children. It was read out that Prof Savidge called the treatment “negligent” at which point the witness broke down and a short break was called to allow her to compose herself.

On resuming, Counsel stated that the witness wanted the report to continue to be quoted so that everyone would hear and know what had happened to her sons. The report continued to pull apart the whole manner of treatment, continuing to call it negligent and indefensible. Savidge concluded that it was very likely the un-heat-treated batches caused the HTLV-III infection. Dr Ludlum also set out a summary of treatments. It was clear that Dr Ludlum had spoken with Dr Martin while he was preparing his report, but there is nothing available directly from Dr Martin. Martin admitted knowing of the risks of AIDS, but Counsel re-confirmed that these risks were not conveyed to the patient’s mother. Some of what Martin said was rebutted by the Savidge report. Martin had denied receiving the letter about the guidance to keep children on cryoprecipitate.

The younger child became quite ill very soon after he tested positive. A meeting at the hospital didn’t really provide any help. Over a 7-week period there were many trips to the hospital, but he was never properly examined, despite having a cough that would not stop. All that happened was it was suggested she was “an over-anxious mum”. From those days the child was never the same again. Eventually, the witness took the boy to A&E and he was immediately admitted. Word soon got round that there was an AIDS patient in the hospital. The boy’s condition continued to deteriorate. The witness became fixated on looking after the boy. He was in a wheelchair and when his mum took him to the shops, it was easier to say he had leukaemia. At the time there were some medical professionals whose attitude was terrible, but not all. There was a plan to put in a slope for the wheelchair, but she was asked if it was worth it since it looked like the boy would be dead before it was finished. The AZT treatment was horrific due to the very toxic side-effects. The boy died at home aged just 9 years old. The witness at first could not let go of her son. Eventually she did, and the boy was taken away with the mum screaming that they had to bring him back. However, the next time she saw him the coffin had already been nailed down.

The elder child was three years older than his brother who died. He became depressed and his health deteriorated. The steroid treatment made him gain a lot of weight, the opposite of his brother who had continually lost weight. The witness felt the virus was attacking the boys brain. He began to have seizures, which was completely outwith the experience of the mother. The headache pains the child was feeling became unbearable. He was moved to a general ward after being in a quiet ward. The noise was terrible. The mum convinced the hospital to let her take him home. The agonising headache pains continued and at one point the child self-administered more pain medication in an attempt to gain some relief. She took him up to the hospital immediately but faced completely insensitive idiots who just saw the child as another over-dosing drug addict.

The child was in and out of hospital a lot during the latter end of his life. At one point he tried to commit suicide. He said he just couldn’t take it any longer. By this time, he was 16 years old. To keep him safe and secure, the third brother would sleep alongside his older sibling. The older boy went into a coma, but his mum thought he was asleep. The brother got into bed with his big brother again as he would often do, not knowing that during the coma the older boy had died. The witness became emotional again, but it was confirmed that she wanted to go on.

Counsel asked about the change of ward where the boy was moved to. The mum refused to let a new doctor touch her son. The doctor had admitted he had never treated a haemophiliac before. They had to get a nurse who was used to treating the boys to administer the treatment he needed.

The family received some financial assistance from the schemes, and a few counselling sessions. As others had mentioned, it always felt like you were begging when seeking financial support. There was also an issue with the death certificate. It mentioned pneumonia and haemophilia. The witness rejected this since “you don’t die of haemophilia”. It should have listed AIDS.

From her statement, Counsel read out how the situation never leaves her. She had waited so long for justice. She felt for the third brother who had watched his siblings die. The witness was often “in another world”. She has attempted suicide more than once. She went through a typical year, listing all the anniversaries which act as constant reminders of her loss. It all still doesn’t make sense to the witness. She went to the boys’ grave before appearing at the Inquiry asking them for strength. She just wants her boys back. It feels like she has to be two people. There is the public face of normality, then there are the times alone of uncontrollable crying. The ache in constant.

A selection of photos of the two boys were displayed. Words cannot express …

The witness gave her thanks to the Chair and his team. She thanked every nurse who looked after the boys at Alder Hay, they were lovely.

The Chair thanked the witness for how she, as a mum, “just goes on” as if the boys were still being cared for by their mother.