Charity celebrates 60 years of research investment: improving nutrition for babies and children | Action Medical Research

Charity celebrates 60 years of research investment: improving nutrition for babies and children

30 July 2012

Action Medical Research, the UK children’s charity, is celebrating its anniversary in 2012 by marking 60 years of funding which has led to some key scientific breakthroughs to help reduce the suffering of sick babies and children.

Thanks to its supporters the charity 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.

Special diet for children with severe liver disease
During the 1990s, an Action Medical Research Training Fellow at Birmingham Children’s Hospital, Dr Susan Protheroe (now Consultant Paediatric Gastroenterologist at the Institute of Child Health, Birmingham Children's Hospital) investigated the provision of a special diet to help avoid malnutrition, forming the basis of a now accepted treatment. 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. [see case study in Editor Notes & video link to the right]

Folic Acid supplementation
In the 1970s and 80s, Action Medical Research funded research by Professor Richard Smithells that paved the way for wider clinical studies which confirmed that folic acid reduced the risk of spina bifida. Women trying to become pregnant are still routinely advised to take folic acid supplements to prevent spina bifida 1 and the number of cases in the UK has dramatically reduced. [see case study in Editor Notes]

Improving nutrition and developing growth charts
The late Professor David Morley is well known for developing the ‘road to health’ weight chart, a graphic aid to help mothers record the growth of their child. Any ‘fall-off’ in growth could be easily detected and helped mum spot early a child’s potential nutrition problems. In 1976 Action Medical Research funded him to prepare a weight chart manual for use in developing countries, incorporating the ‘road to health’ chart. The revolutionary charts are now used worldwide. In the UK today Professor Morley’s charts form the basis of the guidelines used for following growth of breast-fed babies.

Early feeding of premature babies
A more recent key research breakthrough is set to result in clearer guidelines on nutrition and feeding of high-risk premature babies in neonatal units across the UK and potentially worldwide. These babies are vulnerable to severe bowel problems, which has led previously to a tendency to delay the start of milk feeds. Babies who are born both premature and ‘growth-restricted’ would generally benefit from starting milk feeds within the first 24-48 hours after birth, the study co-ordinated by the National Perinatal Epidemiology Unit at the University of Oxford found.* Doctors and nurses can now be more confident in starting to feed these high-risk babies earlier.

Iron deficiency anaemia: new more effective, cheap and safe supplement
Estimates suggest nearly one third of the world’s population are affected by iron deficiency.2,3 Children and pregnant women are particularly vulnerable, sometimes sadly losing their lives. Children with iron deficiency anaemia are at increased risk of infection and their growth and intellectual development can be affected. Dr Jonathan Powell and Dr Dora Pereira, of the Medical Research Council Human Nutrition Research Institute in Cambridge, have developed a new iron supplement, which they hope will be effective, cheap and safe.** The supplement, resembling a form of iron that is naturally present in the gut after we eat our food, should be easier on the stomach. The next step is clinical trials.

Shining a light on vitamin D
We get most of our vitamin D from sunlight on our skin. The vitamin is made by our body under the skin in reaction to UVB rays in sunlight. It is also found in a small number of foods including oily fish, eggs and fortified spreads, breakfast cereals and milk powder.

Professor Mark Kilby, of the University of Birmingham, is investigating the link between pre-eclampsia and vitamin D deficiency. Up to eight per cent of pregnant women worldwide develop pre-eclampsia, a leading cause of death and illness in both mothers and babies.4 The project is focusing on how vitamin D affects the development of the placenta during pregnancy. Pre-eclampsia is thought to occur because the placenta is malformed and in particular because the ‘interaction’ between the mother’s circulation and the placenta is abnormal. His work could eventually lead to clinical trials to find out whether taking vitamin D supplements during pregnancy helps prevent pre-eclampsia.

The other recent project, led by Professor Lesley Rhodes of the University of Manchester, is investigating the influence of lifestyle factors such as sun exposure on vitamin D levels in children from South Asian ethnic groups in the UK. Evidence suggests that these children may be at risk of poor bone health because of vitamin D deficiency.5,6 The research could lead to new public health messages specifically for children with darker skin about sun exposure, which could ultimately prevent vitamin D deficiency.

Diet to correct brain’s weight control circuit?
Evidence suggests that a control circuit in the brain, which is responsible for natural weight control, is faulty in obesity. Professor John Speakman at the University of Aberdeen is investigating whether special diets might correct this fault and help children maintain a healthy weight.

Cleft lip and palate – Despite lack of scientific evidence, some doctors recommend the use of “baby plates” fitted inside the mouth before surgery to improve feeding and facial growth, and to facilitate surgery and speech development. The results of this study suggest that the babies managed with these plates did not feed any better than those managed without, either before or after surgery.

Teenage pregnancy – Researchers found that growing teenagers had better nutritional status and higher levels of hormones in their bloodstream that promote growth of the baby. They also found that growing teenagers delivered fewer small babies than non-growing teenagers. The ultimate aim of the research was to inform the development of nutritional therapies that might improve the health of both teenage mums and their babies.

Osteoporosis prevention – This research was a first in finding a link between an active childhood, calcium and reducing risk of osteoporosis. Results showed that young gymnasts had stronger, bigger bones than their less active counterparts at the start of the study. Calcium supplements had a beneficial effect on the children’s bones but no benefit to the gymnasts, as they had already maximised their bone density potential with regular exercise.

Nutrition after surgery – Following surgery for diseases of the intestine newborn babies cannot be fed by mouth and are fed by drip (parenteral nutrition) until the intestine recovers, but with increased risk of infection. This study showed that by supplementing the feed of these babies with glutamine, a building block of protein present in breast milk, infection is significantly reduced during the time they are dependent on this method feeding.

Still more to do
Although the research we have funded has helped save and change so many children’s lives, there is still so much more to learn about what triggers diseases, how to prevent them and how to develop effective new treatments and find the best ways to care for sick babies and children.

Today, Action Medical Research plays a vital role as the leading UK-wide medical research charity dedicated to helping babies and children.

The charity funds a total of approximately £3 million worth of research grants every year. As well as supporting project grants, awarded in the summer and autumn, the charity also awards Research Training Fellowships annually.

- ENDS -

Case study: Sue Calvert (spina bifida and vitamin supplementation)
Sue Calvert’s second son Matthew was born 32 years ago, with spina bifida – a condition where the spine does not develop properly in the womb. Sadly, after just a few hours, Matthew died.

Then one day Sue received a letter from a Professor Richard Smithells of Leeds University. Professor Smithells had received funding from Action Medical Research to carry out a clinical trial to prove his theory that women taking vitamin supplements, including folic acid, before and during the early weeks of pregnancy would be at significantly lower risk of having a baby with spina bifida. He urged her to get in touch should she ever consider having another child.

Sue joined the trial. Participants were required to take the vitamin supplements three times a day. Five months after beginning the course Sue became pregnant.

Sue remembers, “If it wasn’t for the hope that this research offered of a healthy baby, I wouldn’t have considered another child. I was still so terrified that what happened to Matthew would happen again that I didn’t even tell anyone about the pregnancy.”

“At 18 weeks I had an amniocentesis, where a sample of the amniotic fluid surrounding the foetus is removed and analysed for abnormalities including spina bifida. The test was negative.”

“I gave birth to a bouncing baby boy, William, now 28 – a younger brother for our other son James. Looking back I feel incredibly proud to have helped give doctors knowledge which many women now take for granted.”

Sue’s knowledge of the benefits of medical research has inspired her to become one of Action Medical Research’s busiest fundraisers. “Before I became involved with the charity I never spoke about Matthew, but now when I’m fundraising I find myself talking quite openly about him and my links to the cause. I proudly refer to myself as a ‘guinea pig’. People must understand that we need medical research to live, to move forward.”

It is now known that folic acid supplementation reduces the risk of a baby having a defect of their spinal cord such as spina bifida. Current guidelines on taking folic acid in pregnancy recommend a daily 400 microgram (mcg) folic acid supplement from the time contraception is stopped until the twelfth week of pregnancy. 1


Case study: Katie Haywood (severe liver disease)
Born by caesarean section four weeks before her due date, Katie Haywood was soon diagnosed with Alpha-1 Antitrypsin deficiency, an inherited condition where the body does not make enough of a protein that protects the lungs and liver from damage. She went on to spend five of the first seven weeks of her life in 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.

Life-saving research
Shortly after their baby girl was born, Katie’s parents first met Dr Sue Protheroe who was, at that time, a Clinical Research Fellow in the Liver Unit at Birmingham Children’s Hospital. Later, when baby Katie was being treated as an out-patient, Dr Protheroe asked if Ruth and Nigel would be willing to be involved in her research project.

The children’s charity 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.

“We had no hesitation in agreeing to take part in Dr Protheroe’s research and Katie may not have been with us now if it weren’t for it,” dad Nigel says.


* This project was generously supported by the Garfield Weston Foundation.

** This project is jointly funded by Action Medical Research and WellChild. This project was also generously supported by the Sybil Eastwood Memorial Trust.

1. NICE Clinical Guideline, Antenatal care: Routine care for the healthy pregnant woman. March 2008. (p15). Accessed 22.3.12.
2. World Health Organization. The World Health Report 2002. Reducing Risks, Promoting Healthy Life.
3. United States Census Bureau World Population Clock
4. Steegers EA, von Dadelszen P, Duvekot JJ, Pijnenborg R. Pre-eclampsia. Lancet. 2010;376(9741):631-44.
5. Das G et al. Hypovitaminosis D among healthy adolescent girls attending an inner city school. Arch Dis Child 2006; 91: 569-72.
6. Wharton B et al. Rickets. Lancet 2003; 362: 1389-400.

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T: 01403 327478

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Action Medical Research - the leading UK-wide medical research charity dedicated to helping babies and children - is celebrating 60 years of vital research in 2012. We’ve been funding medical breakthroughs since we began in 1952 and have spent more than £100 million on research that has helped save thousands of children’s lives and changed many more. Today, we continue to find and fund the very best medical research to help stop the suffering of babies and children caused by disease and disability. We want to make a difference in:

  • tackling premature birth and treating sick and vulnerable babies
  • helping children affected by disability, disabling conditions and infections
  • targeting rare diseases that together severely affect many forgotten children.

But there is still so much more to do. Make 2012 a special year and help fund more life-changing research for some of the UK’s sickest babies and children.

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