Parents’ experiences of neonatal surgery

Preparing to go home after neonatal surgery

Being able to bring their baby home was a huge step for many parents. It was a positive sign their babies were on the mend from their surgery, and the end of many days, weeks or even months in hospital. But it was also frightening to leave the “safety net” of hospital, doctors, nurses and equipment. Fiona and Mike were aware they had become “institutionalised”, as they put it. Louise remembers feeling very emotional as she left hospital with her twins, one of whom had surgery.
Losing the safety net

Many parents described how frightening they found taking full responsibility for their baby, after so many weeks in hospital with often such acute care. Victoria’s son had been born prematurely and needed surgery for necrotising enterocolitis ( NEC)* “I don’t think anyone can prepare you for coming home because you are going from having that complete support from doctors, nurses, everybody, to having no-one”. Jane and Ally explained that because they had other children already it wasn’t as daunting as it might have been, and Jane was keen to push staff to hand over care quickly. But for Michelle the thought of leaving hospital was like taking away “the biggest safety blanket you can possibly imagine”. Parents described how hospital staff helped them prepare gradually for this moment by small steps, sometimes called a ‘graded discharge’.

Gradual handover

Often the first step towards getting home was taking their baby out for a short walk or visit to the park. After weeks in a hospital ward, or neonatal intensive care (NICU)*, this was a huge step for parents. Fiona and Mike took their daughter to the park, Sally-Anne and Simon took their son out round the city. “To some people that’s not a lot but for us that was a big thing cos it was the first time us three had been able to be together as a family.” Sally-Anne
Parents are often encouraged to come and sleep over, “room in”, with the baby for a couple of nights in hospital to give them extra confidence. As Zoe said, “It’s horrible, like it’s nothing can prepare you for that…..it was a daunting experience”. But it was all part of setting up routines for being at home, such as bath and bed times. Joanne described how part of the process for her and her baby was gradually reducing the tube feeding and replacing it with more breastfeeding, “They call it normalisation in those last few weeks”. Pamela said, “So just getting to be like a normal baby, so instead of sleeping on their front all the time….they sleep on their back, drinking independently”. Claire found it useful to talk online to other families about their experience of going home with a baby with a tracheostomy*. As well as sleeping over at the hospital, she and her partner were also able to bring the baby home for the odd night to test how well it went. Joanne found that after weeks in hospital, it all felt quite quick. “I think we only maybe got a weeks’ notice that we were leaving, when we were actually leaving, you know, it sort of all happened very suddenly at the end as well.”

Training, and managing the technology

While their baby needed to be well enough to go home, it was often the parents who were being prepared and trained in the last few days. Doctors needed to be confident they would be able to cope with their baby at home. “It was mainly us, wasn’t it, what we had to do”. Mary said this wasn’t so much about testing whether parents had the skills, but rather making sure they themselves felt confident enough to say, ‘yes, I can do it now’. Many hospitals had a set protocol that involved training parents in the various techniques they might need at home, and giving them the confidence to look after their baby on their own.
Depending on the ongoing needs of their baby, parents had different training in addition to first aid and resuscitation. Claire was trained in looking after her son’s tracheostomy and NG tube*, Mary was trained to look after her son’s stoma*, Fiona and Mike had to get used to managing their daughter’s oxygen tank.
Breathing was an issue that several parents talked about as something they hadn’t anticipated or been warned about. Amy said, “Also her breathing and, actually, I had prepared myself so much for the exomphalos* that I hadn’t, hadn’t thought about other issues. So the breathing, you know, it was, you know, there was a chance there’d be other problems but I didn’t realise how much the breathing would be an issue.” Some babies had to come home on oxygen and have their oxygen levels closely monitored, which was very stressful for parents. Fiona and Mike came home without a monitor to measure their daughter’s oxygen levels and it took a while for the local healthcare trust to agree to provide one. As her oxygen levels fluctuated a great deal, they couldn’t have her home successfully without it, “you’d be calling the ambulance all the time.”

Care package

Some babies needed a care package and equipment to be in place before they could go home, although the care required varied. Julie’s son needed carers to come in every evening which took months to negotiate, and Fiona and Mike had to arrange for an oxygen saturation monitor at home for when their daughter left hospital (see above). Some parents found persuading their local NHS that they were skilled enough to use this and to fund the equipment was not easy. Claire needed the community team to be notified about her son’s tracheostomy so they could visit regularly. 

For many parents, going home was “really tough” and daunting. But worth it. People described feeling proud, relieved and excited to get this far. Amy said it felt a bit flat walking out of the hospital and “you almost wanted this ceremony” to mark it as a watershed moment. Louise found it overwhelming and found herself crying.

Rebekah was thrilled to have her daughter home after three months, but struck by how weird it was bringing home a three month old baby, not a newborn. 

“But then I found the strangest is that, is that she was a three month old baby, she came home and she was three months old, it felt like I had a new born because she hadn’t been home. So she’d be doing things that a three month old baby does like smiling or cooing and I was like what are you doing like this is really bizarre because I felt, it felt like she had just been born.” Rebekah

*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. 

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.

Tracheostomy
An opening created at the front of the neck to allow a tube to be inserted into the windpipe (trachea) to help with breathing. 

Nasogastric (NG) tube
A tube placed through the nose into the stomach. This may be used to drain the stomach contents after surgery or to provide milk when babies are not able to feed fully by mouth.

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

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.

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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