When we celebrated CLDF’s 40th anniversary in 2020, we shared the story of Sonia and Peter McGough who, after losing their beloved son, Michael, met with other families affected by childhood liver disease to start the charity which was originally called the Michael McGough Foundation for Liver Disease in Children How it all began – Childrens Liver Disease Foundation (childliverdisease.org)
Penny and John Pink, were at that meeting as their son, Peter, had a very rare liver disease and Penny recalls that day very clearly:
“It is hard to believe that what started out with about eighty sets of parents could have grown to what it is today. That courageous couple put their own grief aside and inspired those of us present to do our best to raise funds to help other children.”
Here Penny tells their story.
Peter, who was born in 1978, was jaundiced a week following his birth and admitted to hospital for photo-light therapy. This resolved the issue and he was discharged at three weeks old with a clean bill of health.
However, our problems were just beginning. Peter would be sick following a feed and was whimpering, rather than crying. I voiced my concerns at the baby clinic, and to my GP, and was advised that, because he was gaining a great deal of weight – up to 1lb a week – there was no need for concern. His abdomen became very distended and his eyes were bulging. When I visited my GP for my six-weekly check-up, the GP examined Peter and said that he was a perfectly formed baby apart from the fact that his abdomen was distended with wind. I became a bit emotional because I knew that something wasn’t right and he agreed to send Peter down to the hospital just to put my mind at rest. I went down that afternoon, with high hopes. A young houseman came on to the ward, examined Peter and turned to me and said one thing he knew for certain was that it was not wind…I smiled for the last time for a long while and replied ‘Oh I’m so relieved, so now you can do something for him’. His reply cut me in two…’I’m not sure that we can…I think it’s his liver so I will send you down for an x-ray’. I rang my husband, and he was waiting for me on the ward when I got back and told me that they didn’t hold out much hope for Peter because the x-ray showed that he had a lot tumours which they thought were cancerous. We were told that he wouldn’t live beyond eight months old.
A few days later, arrangements were made for Peter to be transferred to Southampton General Hospital where detailed scans could be taken. The ward sister suggested that we had Peter baptised before he was moved and this took place that afternoon in the hospital chapel.
Peter the day he was baptised in the hospital.
It was heavy snow that evening and the ambulances and others were on strike so my husband drove (no motorways locally in those days or satnavs) not really knowing the way. We at last found an ambulance station and asked them for directions. They apologised that they could not show us the way, but gave us guidance as to the best route to take. When we arrived, because the telephonists were also on strike, the hospital had no idea that we coming.
We found ourselves on a ward for a couple of days, after which one of the consultants said he wanted to do a needle biopsy on Peter’s liver the next morning. The hospital Chaplain sat with me late into the night and arrived early the next day in readiness for Peter’s procedure.
Later that day the consultant saw us again with what we thought was great news… Peter’s tumours were Haemangioendothelioma, which was very rare, but was not cancerous. It was at this point that Peter went into heart failure, causing more concern. He was put on Digoxin for his heart.
When we returned to St Mary’s hospital in Portsmouth, Peter’s consultant said that he wanted to try steroids to shrink the tumours so he was put on 20mg of Prednisolone, a high dose even for an adult. This worked to some degree but not sufficiently to ease the pressure on his heart. He came home under the care of our GP with regular visits to see the paediatrician.
By the time he was five months old, Peter’s heart was in a very bad way, so arrangements were made for the paediatric cardiologist to see him. Whilst he was examining Peter, Dr Lewis, his consultant in St Mary’s Hospital in Portsmouth, walked into the room to get a form that he needed, quite unexpectedly. As far as we are concerned this this turned out to be a miracle. The heart consultant asked Dr Lewis if he had tried Kings College Hospital, because they were doing amazing pioneering work with children with liver diseases. Shortly afterwards, arrangements were made for Peter to be transferred.
My GP, normally a very friendly man, assured me that no anaesthetist would operate on Peter because he would die on the table and there would be an inquest. He said that I should just leave him in hospital and get on with my life! This broke my heart as you might imagine. I was so angry that the tears I had been holding back poured down my face all evening. With hindsight I could see that he was trying to ‘break me’ because I was staying too strong for the sake of my family, which was making my rheumatoid arthritis very much worse.
Once at Kings, a scan was done to show what was happening. This needed iodine injecting into the groin but Peter’s blood vessels below the liver were far too narrow, so a blood vessel in his neck was used instead. He had a heart attack following this, which was very frightening. However, Mr Howard said that there was a 50/50 chance that Peter could be helped by surgery, by completely tying off the hepatic artery. I remember ringing my husband at work and telling him of the high risk and he asked what Mr Howard had said would happen if he didn’t have the surgery. When I replied that he had said that Peter would be dead, John just replied that we had no choice. It was so hard.
It was the May Bank Holiday weekend, when Peter was five and half months old, that the team at Kings gave up their Bank Holiday to concentrate on Peter’s surgery. Dr Mowatt came up to the ward and said that he had been in theatre at 11am and they had located the hepatic artery. Such wonderful news, although we knew that there was still a long way to go.
Peter was brought back to the ward before 1pm, and already he was able to breathe more easily. That was such a huge relief. We knew he still had a long way to go but things were looking so much more positive.
After three weeks, Peter’s condition had improved so much that we were able to bring him home. He had to be weaned off steroids very slowly and we had to accept that he would have to be quite ill in order to get him off them.
Peter aged three.
Eventually all was well, although to this day Peter has an enlarged heart. He was fourteen before we were told that he had a good prognosis. Every time I asked before that, Dr Mowatt said, very kindly, that he didn’t know, he wasn’t God. The care we had at Kings was second to none. Everyone back in our local hospital couldn’t believe that Peter wasn’t brain damaged. He was known locally as the miracle baby and to us he was.
As a small child, Peter had a short concentration span, and got frustrated when reading and writing. The school didn’t pick up on this or offer any help, because he was scoring well in his SAT scores. They said they had too many children with low scores to give time to Peter. When he was fourteen, we took matters into our own hands and had him tested privately by an educational psychologist. This showed that he is dyslexic. He was on the 6th IQ percentile and was clearly a very clever young man. This was the best thing we could ever have done and our big regret was not having done it sooner.
As his parents, we don’t think Peter’s liver problem directly affected his schooling, except in as much as his enlarged heart affected his stamina. He played rugby for many years but because of his enlarged heart would get breathless toward the end of a match so it was difficult for him to complete the full eighty minutes. We cannot say for sure if the fluid on his brain due to the steroid withdrawal will have affected his concentration when young, or if the high extended course of steroids will have affected his immune system, because he has both psoriatic arthritis and skin psoriasis, which are both auto immune issues. So although he has not been seen in clinic at Kings since he was 17, he is under dermatology and rheumatology consultants in London.
In spite of Peter’s enlarged heat, he served nine years in the RAF, serving in Bosnia, Cyprus, the Falkland Islands and doing a six-month tour of duty in Afghanistan. On leaving the RAF he gained a 2:1 in International Politics at City University.
Peter RAF passing out parade
Peter on duty in Bosnia
Another factor is that because Peter was not expected to live, he was never protected in those early days in our local hospital when having an x-ray or a scan. It was not known if this would affect his fertility, but luckily he and his wife, Karen, have two delightful children Thomas, nine and Emily, six. Peter is currently looking after the children while his wife works and they are a very good team in that respect.
Peter with his wife Karen and children Thomas and Emily
Regarding advice to other parents, we can only say don’t give up on your child. Your love is the most important thing that you can give and don’t be afraid to continue seeking help if you feel that something is wrong. Be persistent. You know your child best. Your child is worth that. One thing that really helped was that Peter’s hand knitted Peter Rabbit who went everywhere with him, even to the Outpatient Clinics. Before Peter had a blood test, Bunnie would have one and be given a ‘bravery’ sticker. We think this really helped.
Another thing that is worth bearing in mind that children can overhear conversations with other parents and can take them onboard. I was quite shaken when Peter, aged nine, overheard that one child had died, and asked me if he was going to die, too.
After much thought we made the decision to tell our two sons Chris, then aged 12, and Jeremy six, who loved their little brother very much, how ill Peter was. I was away from them so much and we were very open with them as to how things were. Did we make the right decision? I honestly don’t know, but all three of our boys are very close to this day. I think each family has to decide on this for themselves. We were very fortunate in that my father lived with us and was like a second father to our sons, so I was able to stay with Peter all the time that he was in hospital. I know that this option isn’t possible for everyone but I do advise families to accept help when it’s offered, particularly when other children are involved.
We feel truly blessed. Where childhood liver disease is concerned, everyone’s journey will be different and it can be a very lonely journey. I’ve tried to cover what might help other parents and I do hope other families will take hope from our story.