Parents’ experiences of neonatal surgery

Bonding with the baby while in hospital for neonatal surgery

Many of the babies were critically ill when they were born, and immediately transferred to a neonatal intensive care unit (NICU)*. They were often wired up to life supporting monitors and drips and inside incubators. Parents told us that bonding and getting to know their baby was often very hard.
It was a steep learning curve, but other parents, like Mary, described how they were supported by staff to look after their baby, and soon became experts.
Joe had not anticipated during her pregnancy how hard it would be to bond with her new daughter, and feel like a Mum, when she couldn’t stay near her in hospital. She found not being able to be an active mum a really different scary and emotional experience.
Claire said it felt “very surreal and I think I just kind of felt very detached from it.” It was only when she started getting to hold the baby more often that she began “vaguely feeling like his mum rather than just his sort of advocate or something”.

Getting used to the intensive care environment

Although they did quickly feel as though they slipped into a routine, getting used to life on the NICU was a steep learning curve. Amy said that although she had seen thousands of pictures and had a tour, actually seeing her daughter in a NICU was a very emotional. “I felt helpless, you know, there was nothing I could do and I just, I was shocked.”

Zoe felt she adapted to the “new world” quite quickly, helped by the fact that she had had a tour and was familiar with the unit. Harry said, “There’s lots of wires coming out of him, and you get used to that quite quickly.”

Barbara found sitting next to her daughter on the first day very hard. The focus was all on the baby and there was no thought given to her needs as a mother who had just given birth. The next morning things were better.

Alix recalled how the attitudes of different staff affected how she was feeling. She remembered one nurse in particular usually left the lid of the incubator up and encouraged her to get involved, while others told her it had to be kept closed. It became a marker for her of how each day would go.
Feeling helpless and finding ways to get involved

Several parents described how “useless” or “helpless” they felt, not being able to do anything for their baby. But at first Joe said, “everything that you had imagined your mummy life to be like wasn’t there at all because you couldn’t even change a nappy…. all you could do was stroke her forehead.” Shanise described feeling like a robot throughout her son’s time in NICU. She had expected to bond, but felt nothing.
Spending time at their baby’s side was all many parents felt they could do and was very important to them. They looked for any small way they could regain some sense of control, whether it was bathing, changing, feeding, talking and singing, touch, or even just choosing blankets or clothes. Victoria said choosing mitts “was the only way for me to be able to give him a bit of character really”.
Holding the baby for the first time

Parents described how important being able to hold their baby was, even though this was quite difficult to make possible. Claire’s son was very ill yet “really lovely” nurses insisted that she hold him every day. “I think that was the start of me vaguely feeling like his mum rather than just sort of his advocate or something. So it was really positive. Obviously terrifying at the same time.” 

Antonio and Alix’s son had congenital diaphragmatic hernia (CDH)* and was very unstable before his operation. Nevertheless staff supported Alix to do some skin to skin (or ‘kangaroo’) care with him the night before his surgery, which they really appreciated. “I was desperate to hold him”.
Being able to care for their baby

Getting involved in caring for their baby was often a challenge for parents when they were in NICU, but greatly appreciated. It gave them a sense of normality, and helped them feel they would be able to cope once their baby came home. Mary’s son had had an operation and a stoma put in shortly after birth. The specialist nurse taught her how to look after it. She soon became an expert. Mary really appreciated that nurses supported her to be involved in things. “I guess I’m somebody that likes to be involved in things and kind of do things as soon as possible so the nurses in the neonatal intensive care would kind of, would happily let me help or do pieces of the, the change.”

Jane said that she sometimes had to be assertive with staff - “I can do this. Trust me”- and ask them to let her take on tasks like bathing. “Because it’s very odd when it’s like, it’s not your baby, you know the baby belongs to the hospital and I think some nurses are very good at making you feel that’s not true and it’s your baby.”
But the small moments of normality did help parents feel they were developing a bond with their son or daughter. One day, staff suggested to Antonio that he make a banner for his son, “one of the nurses looked at me and said “come on, dad, start doing something” and she asked me to make a name, write a banner with his name.’ It was a distraction, “but a change, you know, to interact with your baby and think ahead, so it was really nice of her”. Joe described a lovely moment when her daughter was 8 weeks old. She was helping bath her and realised that she had no wires on.
Fathers

Some mothers we spoke to had reflections on how they felt they bonded with their baby differently to their partner. Jane felt that her husband coped very differently to her. He stopped stroking her bump after their daughter’s diagnosis with exomphalos and felt less of a bond with their daughter in the early days.
Antonio and Alex reflected that the felt the staff tend to push ‘mummy’ to do things and needed to include dads more. “Do I think yes maybe it, it is important I think to have a slight focus maybe towards mum on the first or second day because you have just given birth and things. But I think after a while it should be mummy and daddy, or would Daddy like to change a nappy?”

But it was tricky to get right. Amy E was furious that NICU staff gave her husband the first hold with their daughter while she was at medical appointment for her postnatal recovery. While the staff and her husband felt they were doing the right thing but she felt she was denied her role. “I was so fuming mad I said I should be the first one to hold my child not them, how dare they that should that me.”

(See ‘Feeding the baby before and after neonatal surgery’ and ‘Coping when a baby needs neonatal surgery’).


*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.

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.

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.

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

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.

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