Parents’ experiences of neonatal surgery

Resources & Information

National Perinatal Epidemiology Unit (NPEU)
 
The NPEU is a multi-disciplinary research unit which was established at the University of Oxford, its aims is “to conduct methodologically rigorous research to provide evidence to improve the care provided to women and their families during pregnancy, childbirth, the newborn period and early childhood as well as promoting the effective use of resources by perinatal health services.”

The studies currently being conducted through British Association of Paediatric Surgeons Congenital Anomalies Surveillance System (BAPS-CASS). National surveys of the surgical management of a range of rare congenital anomalies. The site has information about the various research studies.
•    Anorectal Malformations (ARM)
•    Duodenal Atresia or Stenosis
•    Exomphalos
•    Hirschsprung's Disease
•    Meconium Ileus Study
•    Necrotising Enterocolitis
•    Posterior Urethral Valves (PUV)
•    Surgical Short Bowel

British Association of Paediatric Surgeons (BAPS)
National association for paediatric surgeons, with ans information and leaflet section for parents.

The GEEPS (Gastroschisis, Exomphalos and Exstrophy Parents Support) group
An international network of families and friends of children born with abdominal abnormalities.

Gastroschisis and Exomphalos Facebook Group
The GEEPS (Gastroschisis Exomphalos Extrophies Parental Support Group) Facebook page: GEEPS is an international network of families and friends of children born with abdominal abnormalities.

Gastroschisis Family Support Facebook group
Gastroschisis Family Support group on Facebook.
 
CHAMPS: raising awareness of Hirschsprung’s disease
Support group raising awareness of Hirschsprung’s disease.
 
TOFS: support for families of children born unable to swallow
Support group set up by parents of children born with TOFS (Tracheo-Oesophageal Fistula Support)

Short Bowel Survivor and Friends 
Support group for parents and families affected by short bowel syndrome.

Diversions Family Support Network
Diversions' is a support network, based in the North West of England, for families with a child or young person living with a bladder or bowel diversion/dysfunction.

Bliss: for babies born premature or sick
Support and information for families of babies who are born premature or sick.
 
SANDS: stillbirth and neonatal death charity
National charity providing information and support to those affected by stillbirth or neonatal death.
 
Support for the sick newborn and their parents
An Oxford based charity that supports the parents of sick and premature babies in the Newborn Intensive Care Unit at the John Radcliffe Hospital.

CDH UK. The CDH Support Charity
Support and information for parents and families affected by congenital diaphragmatic hernia (CDH).

CHERUBS: Association of Congenital Diaphragmatic Hernia Research, Awareness and Support 
Support group for those affected by CDH.

Great Ormond Street Hospital
Great Ormond Street Hospital website has information resources for a wide range of conditions and medical and surgical treatments and procedures.
 
Southampton Children’s Hospital
Southampton Children’s Hospital website is a good source of information about conditions and medical and surgical treatments and procedures.

 

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