Parents’ experiences of neonatal surgery

Congenital
A congenital disorder is one that is present at birth, sometimes known as a birth defect. It is an error of development that occurs before birth.

Congenital Diaphragmatic Hernia (CDH)
A hole in the diaphragm, the sheet of muscle that separates the chest and abdomen.

Edwards’ Syndrome
A serious genetic condition, caused by too many chromosomes, also known as Trisomy 18.

Extracorporeal membrane oxygenation (ECMO)
ECMO is the use of an artificial lung (membrane) located outside the body (extra corporeal) that puts oxygen into the blood and continuously pumps blood around the body. ECMO is used by babies and children with severe heart or lung failure.

Exomphalos
An abdominal wall defect, that occurs when the baby’s tummy wall does not fully develop in the womb. Some of the baby's intestines and sometimes other organs such as the liver, develop outside the tummy and are covered by the umbilical cord.

Gastroschisis
An abdominal wall defect, that occurs when the baby’s tummy wall does not develop fully in the womb. A hole is present next to the umbilical cord through which the baby’s intestines protrude into fluid around the baby while in the womb, and outside the baby’s tummy after birth.

Hernia
A hernia occurs when part of the body (usually the intestine) protrudes into a place where it should not be. An inguinal (groin) hernia in babies happens when a sac that joins the tummy to the scrotum or labia does not close, allowing the bowel (or ovary) to bulge into it.

High Dependency Unit (HDU)
Babies in an HDU require slightly less monitoring and medical support than in an Intensive Care Unit (ICU). They may still need some help with breathing.

Hirschsprung’s Disease
A rare disorder of the bowel, where the nerve cells do not develop all of the way to the end of the bowel. The section of bowel with no nerve cells cannot relax and it can lead to a blockage. Babies all need surgery and may have ongoing problems with stooling (pooing) normally.

Intestinal Atresia (Duodenal, Jejunal, Ileal or Colonic Atresia)
The term atresia refers to the situation when a baby is born with a blockage in the intestines. This may be a narrowing or a complete obstruction.  The blockage may be single or multiple. Three areas of the small bowel may be affected: the duodenum, jejunum or the ileum. When the large intestine is blocked, this is known as colonic atresia.

Laryngomalacia
Where the cartilage, the tough flexible material, in the larynx or voice box, is very soft from birth and can collapse and cause an obstruction to the airway.

Neonatal
Newborn

Neonatal Intensive Care (NICU)
A unit for critically ill newborn babies and infants who need the highest level of nursing and medical care. Babies in NICU often require support for their breathing. Those undergoing major surgery will often be looked after in a NICU.

Neonatal Surgery Department
Offers specialist surgical treatment for newborn babies for congenital conditions (present at birth) as well as diseases affecting the gastrointestinal tract, urinary system, lungs, diaphragm and abdominal wall.

Necrotising enterocolitis (NEC)
NEC is a serious bowel condition affecting very young babies. Tissues in the intestine become inflamed. Babies can become critically ill and surgery may be required to remove sections of the bowel that are affected. 

Nasogastric (NG) tube
A tube placed through the nose into the stomach. This may be used to drain the stomach contents after surgery or to provide milk when babies are not able to feed fully by mouth.

Oesophageal Atresia (OA) with Trachea-Oesophageal Fistula (TOF)
OA is a rare condition where the oesophagus (gullet/foodpipe) is not connected to the stomach and is blocked. This can be associated with TOF, where the oesophagus (gullet/foodpipe) is joined to the trachea (windpipe). 

Paediatric Surgery Department
Offers specialist surgical treatment for children for congenital conditions (present at birth) as well as diseases affecting the gastrointestinal tract, urinary system, lungs, diaphragm and abdominal wall.

(Total) Parenteral Nutrition (TPN)
TPN is nutrition delivered directly to the blood via a vein.

Omphalocele
Another word for exomphalos

“Paint and wait” technique
Doctors may use a technique called ‘paint and wait’ to treat exomphalos. The sac covering the baby’s organs is left intact and over time the skin grows over the sac. This may or may not be ‘painted’ with antibacterial treatments.

Paediatric Intensive Care Unit (PICU)
PICUs care for children and infants requiring high levels of care, in particular breathing support with a ventilator (breathing machine).

Silo
Used as part of a staged repair for exomphalos and other abdominal wall defects. A temporary envelope of plastic sheeting (silo) is created outside the abdomen. The silo is made smaller over a period of days or even months, so that the abdominal contents are gradually pushed back inside the abdomen.

Special Care Baby Unit (SCBU)
This is a place where newborns receive medical care and nursing support. The term is used interchangeably with ‘NICU’ and ‘HDU’ but may also refer to a place where babies do not require intensive monitoring but have some additional requirements which prevent them from being cared for on a postnatal ward or sent home.

Sonographer
A healthcare professional who performs diagnostic ultrasound.

Stoma 
Surgeons may divide the bowel in an operation and bring the two ends out onto the tummy wall. This is usually a temporary situation to help the intestines or bowel rest and heal.
Faeces (poo) passes into a bag attached to the outside of the body.

Tracheostomy
An opening created at the front of the neck to allow a tube to be inserted into the windpipe (trachea) to help with breathing.