A 20 year old former liver patient and staff from Birmingham Children’s Hospital are celebrating the 60th birthday of Action Medical Research, which helped save her life.
The charity is marking 60 years of funding which has led to some key scientific breakthroughs to help reduce the suffering of sick babies and children.
Dr Sue Protheroe was a Fellow at Birmingham Children’s Hospital when Action Medical Research funded a project to investigate a special diet to help avoid malnutrition, forming the basis of treatment now used widely across the NHS. This enabled children with severe liver disease to experience not only more normal growth and development, but potentially a more successful outcome should they undergo a liver transplant. One of the tiny babies (above) helped by this research is Katie Haywood from Staffordshire, now aged 20.
Katie was born with Alpha-1 Antitrypsin deficiency. This is an inherited condition where the body does not make enough of a protein that protects the lungs and liver from damage (see notes to editors for more information). She went on to spend five of her first seven weeks of her life at Birmingham Children’s Hospital.
Katie’s mum Ruth had what was assumed to be a healthy pregnancy until a routine check up discovered that her baby had stopped growing. The plan was for her to be induced, but as her husband Nigel explains, “Ruth ended up being rushed to theatre. Katie was born by caesarean on 9 June 1992, only 4lbs 6oz and slightly jaundiced.”
“We were thrilled the day Katie came home, but daunted by the prospect that we had a child with liver disease and were now responsible for feeding her with a tube and pump. This was overwhelming at times, especially passing the tube through her nose to deliver the feed to her stomach.”
Katie didn’t walk until she was two years old, but she spoke early and was a real chatterbox with an infectious laugh and a lively, caring nature, her parents say. She went on to do well at school and now, aged 20, is a full-time social work student studying at Lancaster University.
“When I’m not studying, I love travelling, seeing new places, meeting new people, live music and going out for coffee and cake a little too much! I am pleased to report that my medical history doesn’t affect me at all today,” says Katie.
The research involved her parents giving Katie the special milk feed and her being closely monitored over six weeks. “We reported back constantly to Sue and her team on input of feed and weight gain. We were advised on changes to the feed ‘recipe’ as Katie grew and gained weight,” says Nigel.
A year later, Katie weighted 21lb 8oz having gained 17lbs and 2oz.
Dr Sue Protheroe: “Without the funding from Action Medical Research we would not have been able to do this research. Twenty years ago, the chances of survival were not good if you were a poorly nourished baby with severe liver disease. We now have a much better understanding of what has gone wrong in the body, and how we can help reverse that so that children have a better chance of surviving and go on to live very long and happy lives.”
Katie has just completed the first year of her degree and started her first social work placement at a children’s centre in Chorley at the end of July. “I feel honoured that I was part of Dr Protheroe’s groundbreaking research. I was born just at the right time. For it to have improved my quality of life so drastically is priceless!”
For more information please contact Karen Stevens, Communications Manager at Birmingham Children’s Hospital on 0121 333 8511 or firstname.lastname@example.org
Notes to editors
- Photos of Katie Haywood are available for publication
- Interviews with Dr Protheroe can be arranged upon request
Action Medical Research
Thanks to its supporters Action Medical Research has been able to fund research that, amongst other areas, has helped improve nutrition for babies and children with life threatening and disabling conditions.
Action Medical Research has supported more than 50 diet and nutrition-related research projects over their proud 60 year history, with over £3 million investment in this field. Visit www.action.org.uk for more information.
Special diet for children with severe liver disease
Action Medical Research awarded a prestigious Research Training Fellowship in 1993 to Dr Protheroe to look at the problem of malnutrition in children with severe liver disease.
Babies with liver disease are extremely vulnerable to the effects of malnutrition, tragically also previously associated with a high risk of death. Malnutrition continues to affect outcomes for these sick babies.
The liver is vital to growth and development, storing sugar, breaking down proteins and signalling to the muscles to store sugar for energy. If this doesn’t happen, because of disease, the liver turns to muscle tissue to generate energy for the body. This leads to malnutrition causing delayed growth and development and leaving babies vulnerable to further life-threatening illness.
Earlier work in adults had shown that certain proteins – branched chain amino acids – signal to the body what to do with the protein they are fed. Dr Protheroe’s research showed that a special milk feed containing these amino acids helped children with liver disease lay down the muscle stores they need to grow and gain weight.
Birmingham Children’s Hospital NHS Foundation Trust provides a comprehensive service to children, young people and their families.
We are one of the leading paediatric teaching centres in the country, with international research and development in areas such as:
- Childhood cancer studies
- Liver disease
- Infection, inflammation and immunity
- Molecular genetics of childhood conditions (how these are passed on, and how they cause disease in the body in terms of chemistry)
- Nutrition, growth and metabolism in childhood
- Drug use in children
- Relapsed and refractory acute lymphoblastic leukaemia
- Infant neuroblastoma
- Infant brain tumours
Our facilities include:
- A 22 bedded Paediatric Intensive Care Unit
- A centre of excellence for children with cancer, cardiac, liver and renal disease
- A national transplant centre
- 280 inpatient and day-case beds including Child and Adolescent Mental Health Services
- 38 specialties and supporting departments
- An Emergency Department dealing with over 45,000 patients a year
- Twelve theatres
- Three MRI scanners
- A CT Scanner
- An endoscopy suite
- A catheter laboratory with digital imaging facility
- Burn, Neonatal Surgery and Education Centre
- Wellcome Clinical Research Facility
- Renal Unit
- Teenage Cancer Trust Unit
- Ronald McDonald House (parent and family accommodation).