Parents we talked to had often been told about various treatment options, and done their own research, during pregnancy. But it wasn’t until their baby was born that surgeons could assess the anomaly and work out the next steps. Jane’s daughter had exomphalos*. ‘We’d basically been told that we don’t know what is going to happen when she emerges. We’ll assess her and then she will go to intensive care.’ This meant that the early hours and days of treatment were often critical times for their baby, and very stressful for parents. Alison and Martin’s son was operated on immediately for his exomphalos and they were told ‘everything had gone as well as they had hoped’. But for some parents the first few hours and days were very rocky. Claire’s son also had exomphalos and he was rushed to neonatal intensive care (NICU)* as his condition deteriorated overnight.
When investigations discover other problems
In addition to starting early treatment, and getting them stablised in special care units (NICU) or pediatric surgical wards, this was a time when other complications came to light for some babies. Claire’s son had been diagnosed with exomphalos during pregnancy, but in the first few days doctors also discovered that he had a floppy airway (laryngomalacia*) and would need a tracheostomy*. He also had a hearing test which found he was deaf.
For babies who had congenital bowel conditions (exomphalos and gastroschisis*) the focus was on getting the organs that were outside the body (bowel, liver, stomach) back inside. There were different approaches taken depending on the severity and nature of the condition and the decisions of the surgical team. Alison and Martin’s son had exomphalos and had surgery the first night, but many babies had other more conservative treatments first to try and protect the bowel and push some of it back inside before the hole in the tummy wall could be closed. A common treatment was a silo*.
Several parents were struck by how ‘low tech’ some of the treatments were for their baby’s condition. At various stages gravity, cling film and manuka honey were used to treat their baby, while at the same time they were connected to high tech machinery and receiving one to one nursing care.
Another treatment technique used was called ‘paint and wait’*.
While most babies that have early surgery don’t have any major complications, several parents we spoke to remembered very clearly the setbacks their baby had in the early days and didn’t feel that progress was straightforward. Jane remembers that her daughter had become severely unwell the first night when doctors had tried to push her bowel back in.
Barbara’s daughter had gastroschisis and was put in a silo to slowly squeeze her bowels back inside her. So she knew she was going to be in hospital for weeks. And then ‘all the unexpected stuff started happening, you know, line insertions, infected lines all of that, and it got really hard.’
But most neonatal surgical operations go straightforwardly and babies who are healthy and well otherwise do very well. Harry and Michelle’s son had gastroschsis. He was taken off to NICU soon after birth. By the time they were able to go and visit him a couple of hours later they were shocked by the wires and monitors around him, but reassured he was stabilised. He had his surgery a few days later.
An abdominal wall defect, that occurs when the baby’s tummy wall does not develop fully 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.
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.
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.
An opening created at the front of the neck to allow a tube to be inserted into the windpipe (trachea) to help with breathing.
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.
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.
‘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.