Parents’ experiences of neonatal surgery

Preparing for neonatal surgery

Depending on the condition and its severity, the day of the baby’s surgery might be long planned and anticipated, or it might be an emergency which gave parents very little time to prepare themselves.

Emergency operations

Pamela’s son had been born prematurely and when he was about a week old, his condition started to go downhill and the doctors were very worried about him. He had developed an infection in his bowel called necrotising enterocolitis (NEC)* and needed emergency surgery. The surgeon came to speak to Pamela to explain they had to operate immediately.
Ammy E had just given birth to her daughter who had been diagnosed before birth with gastroschisis*. She had just sent her husband and parents home, when the surgeon arrived at her bedside to tell her that he needed to operate immediately as it was a very complicated case.
Giving consent for emergency surgery so quickly after birth felt traumatic and surreal, and it could be hard to absorb the information given. 

Planning for surgery

Other parents had days or weeks to prepare for their baby’s surgery. While this was less traumatic, there was still plenty to be nervous about. Depending on the condition their child had, the period of waiting was often to allow their baby to get bigger and stronger and therefore be able to cope with the surgery better. In some cases (e.g. Mary’s son), an early emergency surgery that resulted in a stoma* was later followed by a more planned procedure. In her case her son needed a second operation to join up the bowel that had been separated.

Babies with exomphalos* were treated with different approaches. While Alison and Martin’s son had an operation to close his tummy wall immediately, Jane’s daughter was managed with a treatment technique called “paint and wait” *and didn’t have her closure operation until she was 6 months old. Joe’s daughter had a heart condition and weak lungs, as well as an exomphalos to correct. She was able to persuade the surgeon to postpone her daughter’s operation for a few months, until she was bigger and stronger.
Alix and Antonio’s baby had congenital diagphragmatic hernia (CDH)* and his condition was very unstable for the first few weeks. But finally his condition started to improve and the surgeon visited to say that if he remained stable for 3 days, he would be ready for his operation. This made Alix and Antonio feel very positive. The surgeon explained what she planned to do and he was readied for surgery.
Louise’s son also had CDH, and agreed that it was a relief once her son was strong enough for the operation. “At that point I felt like we were on the home straight. It didn’t feel like the operation was the scary bit, it felt like he’s done the hard bit, he’s through the worst bit…..We didn’t have to worry that we’d lose him at that point.”

Meeting the surgeon

Parents met the surgeon at different stages depending on the way their baby’s condition developed. For some, they had had meetings well in advance, but often it was just in the final stages before the operation that parents met the surgeon. Vanessa’s son has bowel condition called Hirschsprung’s disease* and his operation was planned for when he was about two months old. They had a pre-operation appointment with the surgeon who explained what they would do, and what to expect on the day. She felt well prepared, although it was daunting. James and Clare’s son was also having surgery for Hirschsprung’s disease, but he was older. They appreciated the measured approach the surgeon took with them as he explained the forthcoming operation.
Adam and Sonya’s daughter developed a hernia* when she was three weeks old, which needed immediate surgery. They met the anaesthetist just before her operation who explained the operation and what would happen.
Parents often faced a great deal of uncertainty ahead of surgery. How would their baby cope with the anaesthetic, and what would the surgeons need to do once they could really see what was going on inside their baby? Surgeons often had to explain that their would not know finally what they would need to do until they were operating (such as Rebekah’s daughter who had a jejunal atresia*). So several options were often laid out, particularly in relation to how much bowel would need to be removed, or whether a stoma would be needed or not. Parents could appreciate that surgeons wanted to be realistic and not give them false hope where there was lots of uncertainty. But Vanessa and Adam and Sonya were glad to be reassured by surgeons that in their case the operation was likely to be straightforward.
Hard handing your baby over

Parents had to sign a consent form before surgery, which many found very hard. Antonio said he found it “shocking” to have to sign on behalf of his baby. Sally-Anne had to sign the consent form for her son’s operation, as she and her partner weren’t married. She felt a guilty and a great burden of responsibility.
Handing over their baby to surgeons often felt like a huge step. Joanne’s daughter had had a couple of emergency operations, but when the day for her big, planned operation arrived she found it very hard. It was the first time she had really had a chance to prepare herself properly.
Being able to look after their baby the night before surgery was very important. Alix was encouraged to do kangaroo care, even though her son was in special care. Mary had been looking after her son at home, and was allowed to take him home again once he had had his pre-operative tests done. She bought him back in early the next morning for his operation to reverse his stoma. 

*Footnote definitions:

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. 

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.

Stoma
Surgeons may divide the bowel in an operation and bring the two ends out on to 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.

Exomphalos
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.

“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.

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

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 normally.

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.

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.

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