Parents’ experiences of neonatal surgery

Relationship with health professionals before and after neonatal surgery

Babies with surgical needs are often cared for by multi-disciplinary teams while in hospital. There was often a complex group of paediatricians, surgeons, neonatal nurses, physiotherapists, anaesthetists, from across different hospitals, for parents to get to know. The health professionals on duty would change each shift as well. Building these relationships was really important to parents, as these were the people caring for their sick baby, who could explain and update them on their child’s progress and (often) complex medical and surgical treatments. Good relationships with their baby’s team were key in helping the parents we talked to feel reassured that their baby was receiving the best care. Michelle and Harry’s whose baby was in neonatal intensive care with gastroschisis* said:
Parents found it hard at first having other people looking after their newborn baby but many talked about the strong relationships they developed with the nurses, doctors and surgeons during the time their baby was in hospital.
On the whole, parents were extremely grateful for the care and support from staff. However, as there was such a wide range of staff they came across during their time in hospital with their baby, there were some negative as well as positive experiences of relationships. 

Midwives and doctors at diagnosis

Several parents described how they valued the support from specialist midwives shortly after their diagnostic scans and meetings with fetal medicine doctors. While all of a sudden their pregnancy had become very medical and frightening, the midwives who reassured and explained the condition to them were remembered as really supportive. They provided vital emotional support at a very distressing time. Alison said the midwife was “the shining light” and really tuned in to how they were feeling.
Nurses

Nurses in the special care, neonatal intensive care or high dependency wards where babies were being looked after before or after their surgery were often key figures. Parents spent long hours sitting next to their baby. They could build relationships with the nurses and really get to know them. In addition to caring for the baby they were vital in communicating between surgeons, doctors and parents, and in providing support to parents at a really stressful and frightening time. Parents really appreciated the manner of the nurses and doctors who were looking after their baby, which helped build a good relationship.
Specialist nurses

Some parents were linked up with specialist nurses, e.g. a stoma nurse*, and really valued the extra support, counselling and advice they received. These specialist nurses often worked closely with the surgeon and were a lynchpin for parents in terms of organisation and information about their baby. They were also able to teach parents the special skills they needed to look after their baby, such as rectal wash outs and changing the stoma bag.
Nurses supporting parents

In addition to the vital role they played in looking after their babies, several parents felt that the nurses were also looking out for them as well. Sally-Anne remembers that the nurses made her and her husband take a break sometimes. “They didn’t just look after son, they also looked after us and, you know, they could see when we was getting tired and things like that and they’d say, ‘Right, go home, he’s fine here…. you need to take a break yourself.’” Amy E described a nurse who stayed to support her when she was feeling at rock bottom after her daughter’s surgery. “I remember I just didn’t want to leave her and the nurse refused to go on her break, cos she said she had to stay with me…. That means a lot to me that you picked up how anxious I am and you want to stay to help me out.”
Parents such as Joanne who were in hospital for months built up friendships with some of the nurses. “We had quite a routine in hospital and we did at lots of times have quite a laugh, you know, got to know the nurses really well….one of the nurses moved to another ward and so she now works separately but we’re still good friends, [daughter] was her flower girl at her wedding.”

Different nursing styles

But some parents did find the different styles of nursing quite difficult to adjust to. Barbara found her first day in neonatal intensive care (NICU)* with her daughter difficult and stressful, as she felt the nurse was cold and unfriendly to her. The difference between her and the nurse next day was as “night and day”.
Relationship with surgeons

Nurses were at their baby’s side 24 hours a day, but surgeons visited only on ward rounds and were therefore harder for parents to see and talk to. Parents often felt frustrated that they missed talking to the surgeon, or had to wait long hours to speak to them, and then their time could be short. But Ally had a very positive experience, with the consultant overseeing her son’s care. “If you wanted to speak to them they made themselves available, I can’t fault them on that.”

Honesty was very important to many parents. When surgeons were honest with them that they didn’t know exactly how things were going to pan out it helped to build trust and a good relationship. Jane said her daughter’s surgeon “has that air that you really want surgeons to have, which is kind of quiet confidence and also never bull-shitters….. He has continued to be great and you know, I remember when my daughter finally had her operation, he just appeared out of the blue in his kind of weekend gear and he was like, ‘Oh I was just passing’.” Louise appreciated that the surgeon was willing to reassure her, saying “There’s always hope”, while her son was on HDU. Sometimes it was the little things which helped to develop a good relationship between parents and their baby’s surgeon; the time to talk, making a joke, making the extra effort to pop in at the weekend or stop them in the corridor to see how they were doing.
(See also ‘Neonatal surgery- parents’ experiences of communication with health professionals’) 

*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.

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.

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. Stoma nurses provide specialist support for a baby with a stoma.

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.

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