Growth in infants with Congenital Diaphragmatic Herniae

  • Research type

    Research Study

  • Full title

    Growth and Nutritional Sequalae in Infants who have undergone repair of Congenital Diaphragmatic Herniae (CDH)

  • IRAS ID

    173808

  • Contact name

    Ann Hickey

  • Contact email

    annhickey@nhs.net

  • Duration of Study in the UK

    0 years, 6 months, 1 days

  • Research summary

    Survival of infants with congential diaphragmatic herniae (CDH) has improved over the last 30 years, however information about their longer-term health is limited. Information about nutrition and growth is particularly sparse, however small studies suggest problems with growth are common in these patients. The impact of poor growth in infancy on child development and wider health is well known and therefore looking at how common this is in infants with CDH, as well as factors that may be associated with it will enable doctors to identify high-risk infants. Fetoscopic tracheal occlusion (FETO) is a treatment offered at King’s College Hospital in cases where fetal prognosis is poor. This is the only centre in the UK to offer this intervention, resulting in a uniquely complex group of infants with severe CDH. Information about growth and feeding in these patients will be valuable in the antenatal counselling of parents considering FETO. This project will also aim to find out how much nutritional support these patients require from dieticians and speech and language therapists, as well as how often gastrostomy insertion is required.

    This study will aim to recruit 46 patients who have been born at King’s College Hospital with CDH since 2009. Data will be collected relating to their weight and growth over the first 2 years of life, as well as their method of feeding during this time period, i.e. eating normally or requiring nutrition via a nasogastric tube or gastrostomy. Finally a parental questionnaire will be conducted to explore how families perceive and cope with feeding issues at home. The questionnaire has been used in children with a number of other medical conditions but not CDH. The questionnaire will usually be conducted face-to-face in outpatient clinic or by telephone if more convenient for long distance patients.

  • REC name

    North East - Tyne & Wear South Research Ethics Committee

  • REC reference

    15/NE/0202

  • Date of REC Opinion

    11 Jun 2015

  • REC opinion

    Favourable Opinion