Once parents had a diagnosis, planning for the birth of their baby started. Some parents were already being cared for in hospitals that could cater for their baby’s needs (such as teaching hospitals and hospitals that were centres for paediatric surgery). Others were transferred to their closest specialist paediatric specialist centre for both maternity care and their baby’s care, or had just their baby’s care transferred to one hospital, while maternity care stayed in the original hospital. The hospitals offering paediatric surgery were most likely in a nearby city and travel times were often long (see ‘Transferring the care of mother and baby to a specialist hospital‘). There were lots more appointments and scans, which could take up a lot of time, and this was a worrying period.
‘The hospital did everything they could and gave us a tour, and showed us special care and they explained how she would go down to intensive care. But you still can’t quite, until it happens to you, you just don’t know what it is going to be like‘. Jane
Some of the aspects of planning the birth and meeting with surgeons helped parents cope with the uncertainty and waiting. Shanise felt ‘reassured we had a plan’.
Zoe’s daughter had been diagnosed with gastroschisis*. The visit to see the hospital and meet the neonatal consultants was not a happy visit, but did reassure her.
‘It wasn’t a very happy visit, but it did reassure us a lot as well that the outcome can be good it just takes a long time to get there, so yeah..I don’t know if it was the first appointment or the second one that we got told that, normally by their first birthday they can eat their birthday cake and that kind of gave us quite a bit of reassurance that she’d be able to eat everything so, yeah.’ Zoe
The remainder of the pregnancy was hard for parents, as there was often a lot of uncertainty about the extent of the anomaly and how well the baby would be after birth.
‘We were told that it’s very difficult for them to give figures and survival rates because every child is different‘ Fiona and Mike
As Claire said, ‘It was a bit difficult for a surgeon given they have not actually got a patient to talk to or work with.’
Meeting the surgeons
Parents generally found their meetings with the surgeons helpful, although they were not always reassured by what they heard. They commented that it was good to have realistic information even though the surgeon could not give them much certainty. Surgeons explained more about the condition, what was likely to happen to their baby after the birth and what the treatment options were. For example, in a condition like exomphalos (a type of abdominal wall defect)*, if the exomphalos is small, closure surgery would be straight away. For babies with a large exomphalos, closure surgery was likely to be later on, and other approaches like a silo* and ‘paint and wait’* were planned first to encourage the sections of bowel outside the body back in.Jane was told by surgeons that because her baby’s exomphalos was so large they couldn’t really predict how they would handle it. Sally-Anne and Simon came away from their meeting with the surgeons feeling more positive and confident, as they had clearly dealt with their son’s condition before.
‘And I must admit when I come out of that I did feel a lot more positive, you know, it was, they’d give us that little bit of light, you know, that they’d dealt with this before and it wasn’t just, you know, our child just wasn’t gonna be the only one, you know, they’d seen it before, so that was quite positive.’
For babies with gastroschisis, the surgery was likely to happen more quickly. Ally found her meeting with the surgeon clear, with all her questions answered. She was reassured that the surgery wouldn’t be an emergency so if her son was born in the middle of the night it wouldn’t be a problem.
Some parents didn’t feel comfortable with the first surgeons they met, and so sought out alternatives. Joe wasn’t confident that her first surgeon had enough experience of exomphalos and so found a recommendation of a more experienced surgeon through a friend. Amy had found her first surgeon’s approach very bleak, and so transferred to another specialist hospital where she felt more comfortable. She, like others, felt confident to be in the hands of highly specialised medical staff. In a sea of uncertainty if felt like the one thing they could draw strength from.
Seeing the hospital
Parents were often offered a tour of the facilities where their baby was likely to be cared for, which could be helpful as well as a little frightening. Parents were commonly advised that their babies were often going to need to be in neonatal intensive care (NICU)* for several weeks. These can be scary and daunting places, so to have seen one ahead of time, and met some of the staff, was reassuring. Louise was expecting twins, one of whom had a congenital diaphragmatic hernia (CDH)*. The NICU was scary with all its beeps and busyness, but it was good to see it ahead of time.
‘They took us around because it is quite a scary place with all the beeps and things going on and the alarms going off all the time.’ Louise
Planning the birth
Parents were told that the birth of their baby was likely to feel quite busy. In addition to midwives and doctors for the mother, there would also need to be paediatric staff on hand to take immediate care of their baby.
There are different approaches to the best way to deliver exomphalos and gastrochisis babies, which depend in part of the severity of the anomaly and the mother’s health. Some women we spoke to were encouraged to have a caesarean delivery, and others were encouraged to have a vaginal birth, but with an induction so that all the necessary medical staff could be on hand.
Perhaps due to lack of research evidence about which option is best, the advice was often variable. Some parents were told they had no choice, others were advised to have a vaginal birth even though they wanted a caesarean, and visa versa. Some mothers told us they never even knew that a caesarean was an option, while others planned for a vaginal birth and landed up with a caesarean.
Continuing the pregnancy
In some cases, parents said there had been conversations about whether to continue the pregnancy. Some parents felt there had been a pressure to terminate their pregnancy, which they found unwelcome.
‘I always felt by this doctor that there was a pressure to terminate, that I wasn’t making the right decision. Now I think some partly that was them or and maybe partly how I was interpreting. But I felt like I should have terminated in in the eyes there and that wasn’t something I was prepared to do.‘ Amy
Because all of the people who took part in our study were people who had experience of neonatal surgery, we did not include people who chose to terminate a pregnancy. But you can read more about people who did make this choice on our website ‘Ending a pregnancy for fetal abnormality‘.
As well as planning the actual birth of their baby, parents also took the opportunity to work out some of the practicalities of what lay ahead for them. Some had been told to expect to be in hospital for several weeks or months, so they started to think through how they were going to cope with the travel, staying over and looking after other children. Ally was expecting to be in hospital with her new baby for several weeks after he was born. It was over an hour’s drive away, so she arranged for her mother to come and stay to look after her toddler. But it was a worry knowing when she would need to arrive, and whether they could get accommodation in or near the hospital.
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.
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.
Used as part of a staged repair for exomphalos and other abdominal wall defects. A temporary envelope of plastic sheeting (silo) is created outside the abdomen. The silo is made smaller over a period of days or even months, so that the abdominal contents are gradually pushed back inside the abdomen.
‘Paint and wait’ technique
Doctors may use a technique called ‘paint and wait’ to treat exomphalos. The sac covering the baby’s organs is left intact and over time the skin grows over the sac. This may or may not be ‘painted’ with antibacterial treatments.
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 Diaphragmatic Hernia (CDH)
A hole in the diaphragm, the sheet of muscle that separates the chest and abdomen.