Parents’ experiences of neonatal surgery

Neonatal surgery – the day of the surgery

Reaching the day of surgery was in some ways a relief for parents who had been waiting for this moment, but also really difficult and emotional. There was the preparation their baby needed ahead of the operation, the handing them over to the surgeons and then the agonising waiting, often for hours and hours. Fiona said she could barely remember much about the day itself. “That’s part of the trauma of the situation, your mind starts to anaesthetise bits, and you just can’t remember it.” Yet for others every detail seemed to be vividly imprinted on their memory.

Before transfer

The immediate hours and minutes before surgery could be distressing for parents. Their baby was often hungry and grumpy, as they had to be starved before the operation. Sonya and Adam and Barbara described how “hideous” it was trying to comfort their babies. Consent forms needed to be signed (see ‘Preparing for neonatal surgery’). One mum described how she took some photos to remember their baby before any scars. “I wanted a photo of what [Name] looked like without any scars…. looking like she had done, like we’d known her for five weeks to look.”Joe

Getting transferred

Babies that are being cared for in neonatal intensive care (NICU)* will usually need to transferred into a special shuttle transporter to take them to the surgical theatre. This can be complicated and take a long time. Pamela said it was quite a trauma getting her son ready in the shuttle that would take him from his incubator to the surgery. Saying goodbye to him was very hard, “thinking will we ever see him again”. Michelle said, “You will never do anything scarier than walking down behind that incubator, I don’t think”.
Saying goodbye at the door of surgery

Parents had different experiences of whether they were allowed to, or wished to, accompany their baby through to surgery. Some were allowed to stay with their baby while the anaesthetist put them to sleep. Michelle and Harry walked down with their son to the pre-op room before he was taken through to the operating theatre. “The anaesthetist, he was great actually, he talked us through what he was doing.”. But others were asked to hand over their baby earlier and they had different reactions. Victoria found it really hard handing her son over to the surgical team, she was so frightened she “couldn’t bear to walk down with him”. Donna and Matt handed their son over at the door of the operating theatre, as the team were not quite ready for him when they got there. She remembers being in floods of tears outside the operating theatre after her son had gone in. One of the doctors walked past and was very reassuring.

“So we didn’t, we weren’t actually with him when he went, got put to sleep, which I don’t know whether that’s a good thing or a bad thing. But I just remember sort of I was stood in floods of tears outside theatre and one of the doctors walked past that we’d sort of seen and he was like ‘He’ll be alright, he’ll be alright’ and I remember sort of just nodding as I was sobbing.” Donna
Waiting

Waiting during their baby’s surgery was one of the hardest parts of the whole experience for many parents. They had often been prepared for a wait of several hours – Leanne was even told it could be 24 hours. Parents had different ways of passing the hours. Many left the hospital to try and pass the time more quickly. Leanne went for a long lunch, Adam and Sonya went for a walk around the hospital grounds. Victoria went to a nearby shopping centre, “we couldn’t bear to sit at the hospital waiting, you can’t, it’s awful cos you just, you’re just sitting and waiting.”
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Some operations were shorter than expected. Zoe had planned to walk around the local gardens, but by the time she had had a shower, her daughter was back up out of surgery. Waiting for news was agonising and exhausting, even when the operation was quite short. Adam and Sonya said it was “the longest half an hour ever”. Rebekah’s daughter needed to be transferred to a separate hospital for her operation. She was furious that although someone called her to let her know her daughter was out of surgery, it was several hours before she was called again to let her know everything was OK.
The uncertainty was agonising for parents, and for grandparents, as Amy E mentions, “we were all so fraught.” 

There was huge relief when they finally got the call their baby was out of theatre. “I remember it so vividly, they just appeared at the door and you’re kind of looking and scouring their faces to try and see has it done well, has it not gone well?” Michelle 

Some parents were able to see the surgeon immediately after surgery and get news of how the operation had gone. (as Amy E was able to do, see above). Zoe’s daughter had surgery for her gastroschisis*. The surgeon was on the ward quite shortly afterwards, and was “delighted with the way it went, because it was all in one go, they didn’t have to do a partial closure, it was a full closure, he was really, really pleased with it.”
Vanessa’s son had surgery for a bowel condition called Hirschsprung’s disease*. She and her husband took themselves for a walk, and then went back to the hospital. She said the last bit of waiting was the hardest, as they waited for the result from pathology tests. Finally they were able to go and get him – “he was all like grey and, you know, he looked like he’d been in an operation all day, bless him”

*Footnote definitions:

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.

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.

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. Victoria’s son had scar tissue left over from a NEC infection that needed to be removed.

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.

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