A Southampton dietitian has created a new recipe book written specifically for infants with congenital heart disease (CHD).
Dr Luise Marino, who is based at Southampton Children’s Hospital, has developed the book as part of a current research study supported by the National Institute for Health Research (NIHR) and Health Education England which focuses on improving growth in babies born with the condition.
CHD describes a range of defects that develop during pregnancy and affect the normal workings of the heart. These can include valves that are not properly formed and holes between the chambers of the heart.
It is one of the most common birth defects in the UK, affecting up to nine in every 1,000 babies born each year.
“Babies and infants with CHD often experience feeding problems that can affect weight gain, causing parents to worry,” said Dr Marino, who is leading the research programme as part of her NIHR integrated clinical academic clinical lectureship.
“Some young patients who are born with serious heart problems may require two or more operations and these can often be months apart, so healthy growth during this period is important to help improve patients’ long term outcomes.
“Our research in Southampton shows that babies who do not gain weight well before surgery may have a longer stay in hospital and are at a higher risk of developing complications as a result.”
She added: “I decided to write this book as a response to feedback from parents and other health care professionals who felt there was not enough information available to help babies with CHD transition onto food.
“The information combines feedback from parents, as well as the best available evidence and expertise from the wider healthcare team – including speech and language therapists – to provide tasty and nutritious meals suitable for differing ages, with easy-to-follow recipes that have been specially formulated with these vulnerable babies in mind.”
The study is also using My Medical Record – a pioneering website developed by University Hospital Southampton NHS Foundation Trust that allows patients to access parts of their health record from home.
With the help of a health visitor or community nurse, parents will be asked to weigh their babies weekly as well as keep a food diary and send all results to the dietitian electronically using the online home-monitoring programme.
Parents will also have access to the messaging service which will allow them to stay in touch with the team more easily and receive weekly feedback including updated feeding plans and further advice on growth and feeding.
Shelina Permalloo, Southampton Children’s Hospital Charity ambassador and winner of MasterChef 2012, said: “As a new mum who is just about to start with my baby’s first weaning process, I know the importance of having good dietary information that is easily accessible for parents and carers – particularly if your child needs to get the most of every mouthful.
“This book has been created not only to support families through this process but with every penny raised going directly to Southampton Children’s Hospital Charity, it will also help to deliver valuable services that will improve the lives of children from across the region for many years to come.”
The book, For babies who need to get the most out of every mouthful, is available from Southampton Children’s Hospital Charity – part of Southampton Hospital Charity – and costs £3.50. All money raised will go to the Southampton Children’s Hospital dietetics fund.
You can also download the book for free at http://www.uhs.nhs.uk/OurServices/Childhealth/Dietetics/Childrensdietetics.aspx.