Janess daughter was diagnosed with exomphalos* when she was 16 weeks pregnant. She was 8 years old at the time of the interview.

Jane was expecting her second child. Her first daughter had had difficulties during her birth, and so there was quite a big gap between her pregnancies. Jane had her first scan at 16 weeks and the standard bloods taken. Although the scan didn’t show anything, the bloods did. The midwife (thoughtfully) called late one evening and gave her an appointment the next morning at the Fetal Medicine Clinic. She really appreciated not having to wait too long to find out more.

At the Fetal Medicine Clinic they met with a consultant who was very honest about the exomphalos* and potential risk of Edward’s syndrome*. They had more tests, but had to wait 5-6 days for the results, as it was over Christmas. The results were clear, so Jane moved forward with the rest of her pregnancy. She was scanned every two weeks, had regular appointments with fetal medicine doctors and discussions about how to deliver her baby. She was told that her baby had a 50:50 chance of dying after birth, which she found emotionally difficult. One of the ways that she coped was in planning a funeral, just in case.

Jane went online almost immediately, researched everything she could about exomphalos and joined the GEEPS support group, which she found incredibly supportive both during her pregnancy and afterwards. While she is very positive about the care that the hospital gave her and her daughter throughout her 8 years, the information that the hospital gave her, even though it was a teaching hospital in a large city, was just nowhere near detailed enough. She wrote something for them to hand out to future parents that they now use.

Jane and her husband wrote a blog during her pregnancy and afterwards. It was a really helpful way of updating family and friends without having to speak to them all individually. However, Jane did feel very isolated. Friends often didn’t know what to say, and she didn’t go to playgroups with her baby for fear of infection.

During her pregnancy, Jane met with the surgeon and was shown around the intensive care unit. But it didn’t really become real until it was. Her doctor encouraged her to have a vaginal delivery, not least because having a baby in intensive care after a caesarean is really tough. But Jane was really anxious about it, after the experience of her first birth, which had been difficult. In the end, it was decided clinically unadvisable for the baby anyway, as part of her liver was outside the abdominal wall. She was born at 39 weeks by caesarean with many health professionals in attendance.

Jane saw her daughter briefly before she was taken off to intensive care. Although she was doing well initially, overnight she developed respiratory distress and was ventilated in intensive care for 9 days. Although the intensive care doctors and nurses were wonderfully supportive, this was a very tough time, she found being around such sick babies very difficult. Staff were really supportive in finding a room for her in a sick children hostel and supporting her with breastfeeding. She lives 25 miles away so breastfeeding while living at home was not an option. After 9 days her daughter was transferred onto the surgical ward. After the unsuccessful attempt to push the exomphalos back in, the surgeon decided he was going to use the paint and wait* approach. Jane got involved in helping do her daughters daily bath and changing of dressings. They were warned that they could be in hospital for 6 months, but in the end, her daughter developed MRSA and doctors decided that as infection was the biggest risk, she would be better off at home. So at 6 weeks she was sent home.

Driving home was a big challenge. Getting the car seat to fit safely around the exomphalos was almost impossible.

Jane was given good support at home. She had a specialist nurse visiting her every day, a health visitor and home help once a week. Her mother was close and had been involved in looking after her older daughter while she was in hospital. The exomphalos reduced in size well, and by 6 months her daughter was ready to have her surgical procedure to close up the gap. All seemed to be going well until about 12 months when she started developing respiratory distress, and was hospitalised several times with pneumonia. Doctors ultimately diagnosed her respiratory problems as linked to her exomphalos. She is prone to infections and has asthma. She was only signed off by the respiratory doctors 18 months ago (aged 7) and is due another operation with the surgeon at the age of about 13/14.

In terms of family life, her daughters do not appear greatly affected by the experience. Her older daughter does not show any resentment, and her younger daughter enjoys feeling special. She is relaxed about not having a belly button. However, the experience has taken a toll on her marriage, and she and her husband are no longer together. It has also had a huge impact on her working life. For many years she couldn’t commit to a full time job because she needed to take off so much time for hospital appointments or her daughter’s chest infections. At the time of the interview her daughter was 8 and has only just completed her first 100% attendance term record at school. She gave up the work she was doing previously, and found work that she could do from home, flexibly. As a family they live reasonably close to the hospital which has made visits much easier.

* 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.

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

*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.

Jane’s daughter feels her scars make her feel a bit different from other people, in a positive way. She has developed strategies for talking to people who might be unkind.

Jane talked about how the uncertainties around her daughter’s health meant they could not plan to see friends and family. They had been very sociable, so found this hard.

Jane’s daughter had exomphalos. The experience impacted massively on her working life. But has had a silver lining.

Jane found her husband coped very differently, holding himself back from bonding in the early days.

Jane went down to see her daughter the next morning and discovered there was a problem. She was ventilated for 9 days.

Just as they were getting used to normal family life, Jane’s daughter started to get incredibly ill. It was a massive shock.

Jane was terrified of having a CVS, but relieved that it came back clear for Edward’s syndrome. Her daughter’s exomphalos paled into insignificance.

Jane had a lot of discussion with her consultant about whether she would have a caesarean or not. There were pros and cons on both sides.

Jane was prepared, but upset not to be able to be with her daughter after birth.

The midwife called Jane late the night before her follow-up scan, so she didn’st have a long wait. She discovered her daughter had an exomphalos and possible links to Edwards’s syndrome.

Jane was going for regular scans and one day asked if she could have a picture of her baby’s face. The sonographer had been focussing on the exomphalos.