6 October 2022: Panel on Birmingham Children's Hospital - C

The fourth and fifth witnesses in relation to Birmingham Children’s Hospital were a couple who wanted to remain completely anonymous. They are attending to speak about their son who is still alive. He was diagnosed with haemophilia at age 6 months. They discovered a large and obviously painful lump on his back. At first the parents were told to give him Paracetamol. But another doctor said he should be taken immediately to Accident and Emergency. He was admitted to a children’s hospital. The parents were told of their son having haemophilia, which was a surprise since it was not in the family. There had been a suspicion of child abuse with the Police carrying out an interview, but it didn’t lead to anything. The initial treatment was with Armour factor concentrates while the boy was still in his infancy. There was no mention of cryoprecipitate or discussions about UK non-commercial options. The child started to become ill with jaundice which was put down to Hepatitis. The advice given was to have a more intensive home cleaning regime. A few years later it was confirmed the boy had HBV. The meeting previously mentioned by other Panel members was not attended by the witnesses. There was a problem with the school because HBV was a notifiable disease. The school refused to let him attend. They tried to reason with the local authority but ended up going to the papers. Eventually, their campaign was successful. When aged 11 or 12 the boy had been told he had HIV. This was in a one-to-one meeting with the doctor. He assumed his parents knew so he never mentioned it. It was a few more years later that it became known through a conversation with the son. All during the intervening years he had lived at home and could have infected his parents and siblings. He had been to hospital very regularly due to bleeds,  but nothing had ever been said. Medical records indicated how testing had been ongoing, but the family were totally ignorant. Once the immediate family did know, they had kept the information from the rest of the family and friends due to the stigma. They assumed their son would die young. The Inquiry is the first time the couple have ever spoken about the situation. As a teenager their son reported the impact of being told as a teenager he had a disease which would probably kill him. He was an angry person who was not nice to be around, he said about himself. He had questioned everything. He reached adulthood and managed to find a girlfriend but thought he could not face the impact of his viral status on a relationship. He could not settle in work either, until his dad created a job for him. The health impacts continue to stop their son from doing many things other people see as normal. His terrible headaches called into question his suitability to drive, for example. The parents saw it as the family against the world. There was a pact between them about not telling anyone. It meant there was nobody they could trust, but that meant there was nobody to talk to. The son has had to live the lie of saying he was lucky because he was not infected. Now as a married man there continue to be pressures and challenges about what to say, if at all, about perpetuating the lie, about the future, about what might happen if people find out.

The issue of trust in doctors was described in similar terms to those of the other Panel members. The witnesses found it revealing to hear what the others had said happened to them in the same hospital. On choice, they said there was no choice. On the communication about infection, it was again inadequate and minimal, if at all. There were lots of chances for the professionals to speak up, but those opportunities were not used. No support was offered to them on dealing with such shattering news.

Their Counsel pointed Inquiry Counsel to the statement of the son on the position the NHS had put his parents in, which was cited.

The Chair asked about the biggest single negative consequence they had faced. The mum said it was that they were not told, not given information. The dad said it was how the son was given a treatment which was known to be infected, when he could have been given something safer. They are “the lucky ones” because their son is still alive, but they don’t know how long he will remain.

The witnesses thanked the Inquiry for bringing this matter out into the open.

The Chair thanked the witnesses, noting that despite it being the first time they have spoken about it in a public setting, they had done it so bravely.

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