Parents’ experiences of neonatal surgery

Before finding out the baby has problem - going for antenatal scans

Discovering during the scan there might be a problem

New parents often look forward to early scans to find out more about their baby. But the early dating scan (normally done around 12 weeks) was sometimes when sonographers (the staff who do ultrasound scans) first picked up a problem that might need surgery, such as exomphalos or gastroschisis*. Most congenital anomalies that are detectable before birth are found at the 20 week scan, otherwise known as the anomaly scan. For the parents we spoke to, the scan where something was found to be wrong was often the single moment that most sticks in their minds, as the first point they had any idea there was something wrong with their baby. This scan day therefore marked the start of a long, uncertain and anxious journey.

Alison was interviewed 25 years after the scan that picked up her son’s exomphalos, and it is still one of the moments that stands out for her.
Many parents we spoke to described how they started to worry as the scan seemed to take longer than they would have expected (for more information see our ‘Antenatal screening’ website). Louise, whose son had congenital diagphragmatic hernia (CDH)*, said “the lady doing the ultrasound sort of slowed down a bit too much on one part of the scan…she stopped talking to us and then said, ‘I’m going to have to call someone in’.” News that there was something wrong with their baby was a shock and left parents feeling bewildered. Sally-Anne described the moment when she was told her son had an exomphalos: “I didn’t know what to think, to say, to do. I looked at [partner] and it was just empty, wasn’t it?”
Parents were often taken into another room to see a midwife who could explain the condition in a bit more detail. This was an opportunity to start to gather more information.

Confirming a diagnosis

Sometimes sonographers could give a diagnosis immediately, in other cases parents needed to come back for further tests. In all cases they were referred to a fetal medicine specialist. Some were able to see a specialist the same or following day, but others had to wait longer. Often more scans and tests were needed to confirm the diagnosis and rule out other problems, such as Edwards’ syndrome. Waiting for that next appointment was often an agonising few days; as Joe said: “for three days we were panic stricken”. During this period, parents sometimes discussed what they might do if they were told the baby had a particular condition, but some didn’t want to think ahead until they knew more.
Thinking about whether to continue the pregnancy

In some cases doctors also discussed with parents the option of ending the pregnancy. While many parents do decide to end or ‘terminate’ the pregnancy when they learn their baby has a serious problem, the parents we interviewed for this study did not make this choice and found the sometimes repeated discussions of terminations upsetting. Specialist midwives were often very supportive in giving reassurance and advice in these early days (for more see ‘Getting a diagnosis that the baby has a problem and needs neonatal surgery’).
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.

Regular scans during the rest of pregnancy

Women often had to have a series of tests and scans through the rest of their pregnancy. A common regret that mothers described was how further scans often focused on their baby’s anomaly, and never seemed to look at the whole baby. They were sad not to have photos of their whole baby or their face. Joe said, “we never really got to see the rest of [the baby] because it was always concentrated on what was inside.” The scans were the moment when their pregnancy started to feel very medical and monitored pregnancy.
Getting information in the early stages 

Conditions which need surgery shortly after birth are often rare conditions (see ‘What is neonatal surgery?’). Parents remembered finding it difficult to get clear guidance on risks and likely outcomes for their baby at the time of diagnosis, and felt messages from professionals were often mixed. Claire described how she “pressed the consultant” about her son’s chances based on all the scans he’d had. Amy E’s daughter was diagnosed with gastroschisis, and was told by the consultant, “‘If you had to choose to have something wrong with your child, you would choose this because 95% of them are fine in the end’ which is it’s kind of nice to say, but you’re at a point when you’re like ‘I don’t want anything wrong, thanks’.” Parents were often referred to a specialist paediatric surgical hospital after diagnosis (for more see ‘Living with uncertainty before and after neonatal surgery’ and ‘Transferring the care of mother and baby to a specialist hospital’).
Scans often brought worrying news and/or more uncertainty for parents. But Joe explained how she turned one scan into a happy event. She planned with the sonographer how they could make it a surprise party for the whole family.


*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.

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

Edwards’ Syndrome
A serious genetic condition, caused by too many chromosomes, also known as Trisomy 18.

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