Parents’ experiences of neonatal surgery

Victoria

Age at interview: 31
Age at diagnosis: 31

Brief outline: Victoria’s first child arrived very early, at just under 26 weeks gestation. He was cared for in neonatal intensive care. He contracted an infection in his bowel and several weeks later required surgery to remove some scarring left over in his intestines. He is now home and thriving.

Background: Victoria is a nurse, managing a care centre. She has one son.

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Victoria was over the moon to be pregnant for the first time, after some fertility worries. Everything went well for the first few weeks, but at 25 weeks, Victoria started experiencing contractions. Doctors managed to administer steroids and postpone the birth for a few days, but Victoria’s son was born very early, at 25 weeks and 5 days gestation. There were 18 people in the room when he was born, and he was immediately taken to neonatal intensive care (NICU)*. 

Victoria was able to go and see her son a few hours later, and embarked on what was going to be a long “NICU journey”. Her son did well for 5 weeks but then developed an infection of the bowel, called necrotising enterocolitis (NEC)*. He was very poorly and put on antibiotics to try and cure the infection. He was sent to a hospital with paediatric surgery facilities, in case he needed surgery to remove the infected section of bowel. He was there for 4 weeks and the infection improved, so he was sent back to the local hospital where he had been born. However, a week later, his stomach was distended again and everyone was worried he had developed NEC a second time. He was transferred back to the specialist hospital, where they established that it was not an infection causing the problem, but post NEC strictures, or scar tissue in his bowel from the infection that were restricting his bowel. He needed an operation to remove the scarred area. 

Her son was 10 weeks old. Victoria and her partner were prepared for their son needing a stoma for a few months. But when he came back from the operation, surgeons had managed to do the operation without the need for a stoma bag. Her son recovered enough to be transferred back to the general hospital, and then finally home. Victoria found it very frightening being at home with him at first after 17 weeks in hospital, with experts on hand at all times. But she was growing in confidence and delighted to have him home. However, she was still very busy with various follow up appointments for him – neonatal consultant, surgeons, eye, heart and respiratory specialists – he was 24 weeks old at the time of the interview and doing well.

* 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.

*Necrotising enterocolitis (NEC)
NEC is a serious bowel condition affecting very young babies. Tissues in the intestine become inflamed. Babies can become critically ill and surgery may be required to remove sections of the bowel that are affected.

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