Parents’ experiences of neonatal surgery

Birth experiences of the parents in the neonatal surgery study

Of the women we talked to their experiences of the birth of their baby were very different, depending on whether their baby’s condition had been diagnosed before birth, and if so whether they had been advised or chosen to have a caesarean or vaginal delivery. Both those who were expecting a baby whose condition had been already diagnosed and those who discovered something was wrong at the birth often described it as a “surreal” experience, a bit like a dream or like watching a film or TV programme unfold. 

Birth after diagnosis in pregnancy

Mothers expecting a baby with exomphalos* or gastroschisis* had discussed and carefully planned their birth with doctors, surgeons and midwives. Many were booked in for a planned caesarean operation, and appreciated the feeling of control this gave them, as there was so much uncertainty about their baby’s health outcomes after the birth. Claire appreciated the planned caesarean for her son who had an exomphalos, she felt it allowed a level of control in a very unpredictable situation. But not all parents felt they had control. Zoe arrived at the hospital expecting to be induced the next day, but the induction started as soon as she arrived and her daughter was born a few hours later.
But even so, it was not a normal experience. Jane said, “She got handed over to the professionals [laughs] and it was not a nice experience, and it was a very bizarre experience, not like a normal experience of having a baby at all.” 

Doctors may advise that a vaginal delivery is possible or may even be better for the baby, but it is possible that in this situation that the birth will be induced so the baby’s care can be organised in a planned way. Michelle and Harry’s baby had been diagnosed with gastroschisis and they really appreciated that they were supported in having as natural a birth as possible until the very last moment. Neonatal staff were ready and discretely waiting in the background to take their son away to intensive care (NICU)* as soon as he was born. The midwife made sure she had a cuddle with her son before he was whisked away.
Amy E was expecting her first child, a girl who had been diagnosed with gastroschisis. She was induced at 37 weeks, and found waiting for her daughter, not knowing if she was going to make it or not, very frightening. A reassuring midwife comforted her. She described her as her “shining light”.
Several parents described worrying moments when their baby did not cry out straight away. In some cases, their baby needed to be resuscitated. Sally-Anne was on tenterhooks, and relieved when the covers were pulled back and she could see her son’s legs moving. Hayley and Thomas’s son wasn’t breathing when he was born and was taken down to NICU.

Lots of people in the delivery suite

Something that parents remembered vividly was that there were a lot of people in the room. In addition to the doctors and midwives needed to look after them, there were also neonatal doctors and nurses on hand to take immediate care of their baby, either already in attendance, or called as an emergency. Some mothers found this reassuring, others overwhelming. Amy E said, “I just closed my eyes ‘cos there were about 10 people in there and I just thought I can’t keep looking at everyone in here.”

Jane’s daughter had an exomphalos, and she has been back to the hospital regularly over the years for follow up. She joked that every time she goes to the hospital she’ll see someone who was at her daughter’s birth - it felt like there had been a “cast of thousands”. Hayley and Thomas’s son had an exomphalos. The room filled up with about 8 or 9 people as he was about to arrive.
To hold or not to hold

Some mothers were not able to hold their baby after he or she was born. While they understood it was necessary to rush them away to intensive care (NICU), it was still a source of great sadness and distress. Jane was relieved that her husband was able to follow her daughter wherever she was taken after birth.
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Some mothers were allowed a cuddle with their baby before they were whisked away. Ally’s son had gastroschisis. She was given a quick hold of him before he was taken away to be stabilised. Zoe described the room fill up just before her daughter, with gastroschisis, was born. She was allowed to hold her briefly. 

I got to hold her for probably not even a minute and then I could see her in the corner to my left and there was just people all around her I couldn’t really see what was going on there was like a tiny wee gap I could just about see her face.” Zoe

But some women told us they did not feel well enough themselves to want or be able to have a cuddle in those first few minutes. Ally said, “I didn’t feel comfortable”, Joe was unwell herself and felt too ill to hold her new daughter. 

Parents who had spent months waiting nervously for the arrival of their son or daughter with a congenital* anomaly like exomphalos or gastroschisis described their concerns about whether they were going to be horrified by the appearance of external bowels once they were born. But Barbara and Hayley and Thomas were relieved to find they looked past these to the baby in their arms. Barbara was able to have a quick cuddle with her daughter who had gastroschisis. She was relieved to find she still loved her. 

“And then they gave her to me in the little bag for a cuddle and I was really relieved to still love her even though she was you know, you could see this bag of bowels, you know, and I was concerned about how I might feel about that. But, you know, her little face was just perfect, absolutely perfect so I just looked at that didn’t look at the bag, had a little cuddle with her.” Barbara
Discovering the diagnosis at birth

Some parents we spoke to had babies who developed complications shortly after they were born. Alix had a natural birth in a waterpool, but immediately staff realised there was something wrong. Her son was covered in meconium and not breathing well. The crash team was called.
For more see ‘Hirschsprung’s disease - getting ill & diagnosis’ and ‘Getting ill & diagnosis of other conditions needing neonatal surgery’.


* Footnote definitions:

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.

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.

Congenital
A congenital disorder, means it is present at birth, sometimes known as a birth defect, is an error of development that occurs before birth.

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