Parents’ experiences of neonatal surgery

Daily Life – Getting into a routine at the hospital

Having a baby in hospital can be a stressful and exhausting time. Travelling can add to the stress, which is why many hospitals offer some form of accommodation on or near the site for family members. Amy said it “means the world” being able to stay right nearby. Developing a daily routine helped parents cope with the uncertainties of what was ahead for their baby. Many found they isolated themselves from the outside world and just drew close family around them to help them through the worrying hours and days at their baby’s side. Jason said that “you put your life on hold”, and his wife added that she couldn’t think of having any celebration for her birthday while the baby was in hospital. Everyone found a slightly different routine for themselves, depending on how well their baby was doing, what sort of unit they were in and what the visiting rules were.
Sonya and Adam were in hospital for three days when their daughter needed a hernia operation at three weeks old. They didn’t really leave their daughter’s cot side at any stage, but were aware that families around them had got into more of a routine if they had been in hospital for a long time, or had other children they needed to look after at home.
Daily Routine

Others found they fell into a routine fairly quickly, particularly if their baby was going to be in hospital for a long time. Joanne’s daughter had emergency surgery and a short bowel. She described how quickly “you start to get used to the hospital environment”. There was a lot of waiting; she was constantly hanging around waiting for one specialist or another to come and see her daughter. 

Michelle and Harry and Mary found the routine they fell into visiting their sons was rather like a work routine all over again. They were arriving first thing in the morning, leaving last thing at night. Michelle said that the routine helped her cope, taking each day as it came. Mary found it helped to take regular tea breaks; she was touched that her parents waited all day in the café to keep her company during her breaks. If they had had to go back to work, dad’s also got into a routine of visiting at the end of their working day, rushing in before visiting hours finished. Although it was a juggle, Mary said her husband, “Used to love coming in after work in the evening, you know, spending his time with [son] which was also hard because you had to time it because there was a nurse handover at 8.00 p.m.”
Ally's son had gastroschisis*. The neonatal intensive care unit (NICU)* he was in allowed visiting 24 hours a day, but she and her husband soon tried to get into a routine they could sustain for weeks rather than a few intense days.
Hayley and Thomas’s son had exomphalos* and was in hospital for several months, before he died. They were encouraged to try and give him as normal experience as possible so played him music and read stories ever night.
Some found themselves reacting differently to their normal selves. Louise said, “My sisters commented that they were surprised, because I'm a worrier as well, like my mother, but they were surprised how strong I was but I think I was, no this is, he’s going to be fine and I’m on a mission to get through this. And I was shut down I think through a lot of it whereas my husband who’s not a worrier at all was at breaking point.”

Many parents valued staying near their baby in hospital accommodation, often provided by a charity. This made the daily routine much easier to manage. But it could mean that mothers spent long stretches on their own at their baby’s side, if their partner had gone back to work, as many had to. Shanise found herself feeling very isolated and bored in the months she sat by her son’s cot in hospital, “I was bored, as well, like so bored.” Mary said the days felt very long and her husband used to bring something to read. Michelle and Joanne both remember a lot of waiting around to speak to a doctor and not feeling able to take a break in case they missed something.
Juggling older siblings was tricky with a baby in hospital. Rebekah stayed at home looking after her two toddlers during the day, and then she and her husband drove the hours drive to the hospital every evening to sit with their daughter for a few hours. It meant she missed out on talking to consultants during the daytime and getting regular updates on her daughter’s progress.
*Footnotes:

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.

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.

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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