Rosie’s story shows just how limited the medical treatment was for children with liver disease 40 years ago.
February 4 1981 is the birth date of my first child, Felicity. She was born in Port Moresby, Papua New Guinea where I was working. She became severely jaundiced after a few days and required two blood transfusions. The paediatrician monitored her for eight weeks with minimal resources and finally declared we should go overseas for further investigations. Telephone calls to a medical relative revealed that options for paediatric liver care were either Denver, Colorado or King’s College Hospital, London. I decided to come home as my mother was living in Kent, so on Easter Monday she met us at Heathrow after a 36 hour journey and took us to Denmark Hill.
After days of tests on the Princess Elizabeth ward that was being refurbished, I was told that Felicity had hepatoblastoma (a rare form of childhood liver cancer). The treatment was a five hour operation to remove a ‘huge’ tumour which necessitated 80% of her liver being resected. Thankfully she did not need chemotherapy and her liver regenerated after a few weeks. We stayed in UK for six months of regular check-ups and it was during this time that I met Barry Barton who represented the newly-formed Michael McGough Foundation. He provided invaluable support to families and being able to connect with others experiencing similar situations was very comforting and reassuring.
Thank goodness for the amazing pioneering team at King’s – Professor Alex Mowat, Mr Ted Howard, Dr Giorgina Miele-Vergani to name but a few – who subsequently spread their expertise to create other centres of excellence around the UK and beyond. It is also heartening to know that the Foundation, now CLDF, is still providing such a great service to families in so many ways. Here’s to the next 40 years!
Felicity is now a primary school teacher and her daughter has just turned 18 and is at university.