Parents’ experiences of neonatal surgery

What happens to the baby after birth when neonatal surgery is needed

For parents who had a diagnosis during pregnancy, birth was finally the moment when they would find out more about their baby’s chances of surviving. Often scans had only been able to give a rough idea how severe their baby’s condition was, and surgeons had warned them that they would have to wait until their baby was born to be sure. 

So the moment of birth and seeing their baby for the first time was a particularly emotional and anxious time. Even remembering that moment years later was upsetting for some of the parents we talked to. Often parents used the word ‘surreal’ to describe how it felt; Nicky said it was “like you were watching it from the corner of the room or something, going through the motions”. Louise said she felt “numb”. 

Ally’s baby was found to have a condition called gastroschisis where there is a hole in the tummy wall*. The doctors who had done the scans before birth had discussed that they would not know what condition the bowel would be in until the baby arrived. She had been told that the surgeons may need to put her son’s bowel temporarily in a bag called a ‘silo’*.
Jane had felt that while she was still carrying her daughter she was safe. So she was very worried about what would happen to her once she was born. “I think once she was born, she got handed over to the professionals and it was not a nice experience, and it was a very bizarre experience, not like a normal experience of having a baby at all.”

Baby being transferred

Parents had often been prepared that their baby would need to be taken swiftly off to be cared for either elsewhere in the hospital, or transferred to another hospital with a specialist unit. But parents said that even when the hospital had done their best to prepare them for what lay ahead, for example showing them around the neonatal intensive care (NICU)* ward, there was nothing that could really prepare them for their baby arriving. Jane said, “You just don’t know what it’s going to be like.”

Sally-Anne said that no one could have prepared her for the distress she felt at her son being taken away so quickly, even though she knew that was what needed to happen. “That was tough, that was hard.” Parents talked of their baby being “whisked away” or “handed over”. Amy said it was “heart-wrenching to have them somewhere where you’re not”.
Amy E’s daughter had gastroschisis. She was very unwell when she was born and was rushed to NICU. Although Amy E understood it was important for staff to stabilise her daughter, rather than talk to her, she still found it a shock. Amy wanted her husband to be able to go follow her daughter, but he was not allowed. This experience of a double separation was not unique. Rebekah described her daughter being taken to another city for surgery on her own (see ‘Transferring the care of mother and baby to a specialist hospital’). Emma was not able to follow her son immediately as she recovered from her caesarean operation. Sally-Anne was glad her partner could go with the baby but said it was really hard for him feeling torn in two directions between her and the baby.
Getting a cuddle - holding the baby 

Some parents were able to have a very quick cuddle with their baby before they were transferred, which they really appreciated. Michelle said that neonatal staff looked “vaguely horrified” when the midwife insisted that she have a cuddle with her son before he was taken through to NICU. Amy’s daughter had exomphalos* and was going to be transferred to another hospital. She wasn’t expecting a cuddle and so was “gobsmacked” when doctors brought her daughter over to her for a quick cuddle. Staff had covered up her tummy, so she didn’t look like she had a defect there, which made it all the harder to hand her back.
Barbara was given her daughter to cuddle before she was transferred to the children’s hospital. She was relieved to love her immediately and not be bothered by her defect.

“And then they gave her to me in the little bag for a cuddle and I was really relieved to still love her even though she was you know, you could see this bag of bowels, you know, and I was concerned about how I might feel about that. But, you know, her little face was just perfect, absolutely perfect so I just looked at that didn’t look at the bag.” Barbara
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Some mothers were not able to, either because the baby had to be taken away very quickly, or because they themselves were too unwell.

Being able to go and see the baby

Ally was allowed to hold her son briefly (who had gastroschisis) before he was taken up to NICU. She and her husband were allowed up to see him a few hours later, but not all parents were allowed to visit their baby immediately. Julie said she had to wait 5 hours or more to see her son, which she found very distressing. She felt the communication from hospital staff was poor.
Several people commented on seeing the baby with wires and tubes, and found them quite shocking at first (see ‘Bonding with the baby while in hospital for neonatal surgery’). 

Communication; updates and photos

Several parents felt that the communication in those early hours about how their baby was getting on was poor. Claire found the communication over the first couple of days while she was still in hospital and her son was in another hospital was the worst bit.

“Most of my contact was from [husband] and in the first two days that was ok because [son] was OK and on a surgical ward. But then when he went down to intensive care the communication there was not great, and that was the worst bit.” Claire
Some staff took photos and brought those to parents to show them where their baby was and what they looked like. This was really helpful to parents at such a distressing time, particularly if the mother wasn’t well enough to go and visit her baby immediately. 

Jane’s daughter was in NICU in the same hospital as her. “They took a photo of her…and that was very nice, very considerate of them….. I had to have these blood transfusions and also had to be sewn up and I was kind of stuck and couldn’t do anything, so that was very difficult.”

*Footnote definitions:

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.

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.

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.

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

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. 

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