Coping when a baby needs neonatal surgery

Parents whose baby needs surgery face a long and emotional journey, from the initial shock of diagnosis, to worrying about their baby’s health after birth, the surgery itself and recovery from their operation. The outcomes were often very unpredictable and uncertain. Parents we talked to described their often very different ways of coping (and sometimes not coping) during this emotional marathon.

Zoe and Barbara both had positive messages for other parents. Zoe’s daughter had gastroschisis*. She said the first few days were the hardest but there were some positive experiences along the way.

Zoe said that in the midst of all the worry, there were positive moments to cherish.

Age at interview 24

Age at diagnosis 22

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Barbara’s daughter had gastroschisis. There were lots of joyous moments as well as lots of heartache.

Age at interview 44

Age at diagnosis 38

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A marathon to cope with

Parents’ journeys were all different, but many described how hard it was to keep going when they didn’t know where the end was. Being in hospital, often in neonatal intensive care (NICU)*, for weeks and months on end, was stressful and a real strain. Fiona and Mike described how hard it was to witness some of the sad outcomes for the babies around them, as well as their intense worry for their daughter. Although for the most part people felt they had no choice but to keep going, day by day, it was common to experience moments when they just broke down. Emma remembered, ‘That was my breaking point day. Embarrassing looking back now, but I think everyone has one.’ Amy said she wasn’t prepared for the strength of her emotions, she was so scared for her daughter.

Fiona and Mike said they both had emotional breakdowns at some stage during the 10 months their daughter was in hospital. There are things they wish they could forget.

Amy was terrified about the outcome for her daughter who had exomphalos. For her, looking at the worst case scenario was her way of coping.

Age at interview 39

Age at diagnosis 33

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Julie said she honestly wasn’st sure how she coped.

Age at interview 39

Age at diagnosis 30

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The twists and turns along the way were hard for parents to cope with, and at times they found they couldn’t cope. Nicky’s son was born prematurely. She had been strong through the early weeks but when he had another set back she found it was the point when she fell apart (see ‘Emotions, support and counselling when a baby has neonatal surgery‘). Victoria developed post-traumatic stress and was having therapy to help her emotionally once her son was home.

After yet another setback, Nicky started to lose her faith in her son getting through. She rang the BLISS helpline and had counselling to help her cope.

Age at interview 39

Age at diagnosis 39

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Leanne found that she had held it all together until her daughter’s surgery day, but found the aftermath really difficult to cope with.

Age at interview 36

Age at diagnosis 36

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Different coping styles

Parents had different ways of coping with their worries and the uncertainties surrounding their baby’s health. Many described the adrenalin kicking in, just getting their heads down and getting through it.

Louise’s twin son had congenital diagphragmatic hernia (CDH)* and she was surprised at how strong she was. ‘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.’

Rebekah’s daughter was in hospital for weeks; adrenalin and going into overdrive’s got her through. Her husband was more emotional.

Many felt that they needed as much, almost forensic, detail as possible about everything that was going on with their baby to help them feel in control. Amy said she stayed by her daughter’s cot as much as she could, and chatted constantly to the nurses, learning and gathering information; ‘it was about that control and it was the little control I did have and finding control when you don’t have any. Or finding a way to be helpful when you’re helpless.’

Some found that being positive and staying hopeful was the best way for them to cope. Jane said, ‘I still do tend to cope with things by just making a joke out of them, I think that’s just the kind of person I am.’

Pamela said that when her son was born prematurely she and her husband made a decision that the only way they were going to get through was to be ‘relentlessly positive’.

Others felt that pessimism, exploring and facing up to the worst-case scenario, was their way of coping. While Amy E said her husband blocked out what was happening, for her facing up to the worst was her way of coping. ‘Even if it was horrendous I wanted to be there so I knew, cos I had in my head what I imagined would be worse than it was gonna be.’

At one point one of the nurses turned to Emma and said, ‘You are planning your son’s funeral, and you [her husband] are thinking of him being 18’. She felt that this was the only way she could cope.

There were also points when the worry got too much. Emma said her husband just had to leave the hospital for the whole of their son’s surgery, the situation was so intense.

“He disappeared from about 11 ‘o’ clock in the morning didn’t come back until 6 ‘o’ clock at night, the whole surgery, just went. He said, ‘I couldn’t cope I was gonna thump someone for holding him down and just making him scream’ he was that upset and that fed up having people hold him down, even though it’s for [son]’s good, as a dad he was like ‘I wanted to thump one of them so it was better for me to walk away.’ And it wasn’t that he was bad against the doctors it was just it was an intense situation.’ Emma

Some parents felt they needed to shut down or bottle up their emotions. Shanise said, ‘I think my emotions and my feelings were the last things to think about.’ Pamela said her husband was a ‘bottler-upper’ and ‘better at shutting stuff out.’ Mike said he ‘tried to keep it all inside’ and there were parts of the experience, ‘just don’t think about it’.

Coping as a couple

Parents often found that they coped differently with the stress and worry, which could be a way of helping each other get through. Some talked about how they would have opposite approaches; one positive and one negative, or one emotional, and the other practical. Rebekah said she herself wasn’t really ‘an emotional support person’ but her husband was more emotional and more of a worrier. Adam felt he had to prise his wife away from her daughter’s bed during the surgery. She wanted to sit by her cot and wait, but he forced her to eat some lunch and walk around the hospital grounds.

Sally-Anne described how her husband’s strength and positive approach helped her through.

Amy’s partner coped by being all light-hearted. She knew it was helpful for her and his way of coping, she also got pretty annoyed by it.

Age at interview 39

Age at diagnosis 33

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James and Clare’s son was diagnosed with Hirschsprung’s disease. They coped very differently as they approached his operation.

Looking back, parents could draw strength from the fact that they did cope and had come through the long ordeal. Michelle and Harry said they wouldn’t have chosen the experience but feel well equipped to face anything now. ‘You get through it, don’t you?’

Sonya and Adam felt they had been set their first test as parents and passed.

*Footnote definitions:

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.

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.

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 (pooing) normally.