Sally-Anne & Simon

When Sally-Anne was pregnant with her first son aged 20, scans revealed he had an exomphalos*. He had surgery when he was a few days old, which was successful. But he is now 13 and still has digestion problems.

Sally-Anne and Simon were expecting their first child. A scan at 12 weeks revealed that their son had an exomphalos* major. Sally-Anne was scanned regularly during her pregnancy and had her son by caesarean at 40 weeks and 2 days. She was able to say hello to him briefly, but then he needed to be transferred to another hospital to be cared for in neonatal intensive care unit (NICU)*.

Their son had his first surgery to close the exomphalos when he was five days old. Although it was successful in getting the organs back inside the body, the skin was not healing well. It was very thin which caused it to break. After a few more weeks in hospital they were able to bring their son home, although they did need to return to hospital every week for check-ups with the surgeons until he was about 5 months old. At three months old he had another minor operation to remove the gortex patch that had been covering the wound, to allow the skin to heal over completely.

For the first year, he was developing well. Sally-Anne and Simon were caring for him at home. His third operation was at 18 months, which was when all his organs were put back inside and a pig skin patch sewn over this abdominal wall. He was in hospital for a week and this operation was a success. Their son has grown into a strong healthy boy, he was 13 years old at the time of the interview, attending secondary school, and loves football. But he still has several medical issues that affect his daily life, including severe sickness and diarrohea that he is still seeing specialist doctors to try and sort out.

* 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.

* 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.

Sally-Anne and Simon knew that the operation was risky, and that their son might not survive.

Sally-Anne’s clear message was that you are not along, there are support networks out there to help and support you.

Sally-Anne was allowed to wave goodbye to her son when he was transferred. She felt she had to badger’s the midwives to get news of how he was doing.

Sally-Anne really appreciated the efforts staff put into supporting her to visit and hold her son for the first time.

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

Sally-Anne recalled the rollercoaster of the first day. She was elated to be discharged and able to see her son, and quickly devastated when his condition rapidly worsened.

Sally-Anne said she felt guilty having signed the consent form. Her son nearly died on the operating table.

Sally-Anne felt people were offering her sympathy, when she really wanted to be treated like a normal pregnant woman.

Sally-Anne and Simon had been prepared that their son would need to be transferred, but it broke Sally-Anne’s heart to have to say goodbye to him so quickly. She counted every minute of the 27 ½ hours until she next saw him.

Sally-Anne had a planned caesarean, but found it hard knowing whether she was planning for a christening or a funeral for her son who had an exomphalos*.

Sally-Anne was relieved scans showed her son didn’st have any other anomalies, but she knew he was in for a long fight.

Sally-Anne and Simon had an amniocentesis and were relieved it showed their son just had exomphalos. She knew they were in for a tough road, but they knew they wanted to continue the pregnancy.

Sally-Anne felt that the whole tone of her pregnancy became negative, she was always expecting the worst outcomes.

Simon and Sally-Anne were stunned to be told their son had an exomphalos. The doctor painted a dark picture and repeatedly offered them a termination.