Harry & Michelle

When Michelle was expecting her third son, Harry’s first child, they were shocked when scans picked up that their son had gastroschisis*. He was born at 37 weeks and had surgery. At 3 months old he was home and doing well.

When Michelle was expecting her third son, Harry’s first child, they were shocked when the 12 week scan identified their son had gastroschisis*, and all of his bowel was outside his abdomen. As they already lived close to a major teaching hospital they did not require a transfer to another hospital to access paediatric surgeons. The following day they met with the consultant who would oversee Michelle’s pregnancy who explained more about the condition. Michelle and her partner met the surgical team at 20 weeks to discuss the options for when their son was born, and were given a tour of the neonatal intensive care unit (NICU)* where he would be cared for. Michelle was scanned regularly at first every 4 weeks, then every 2 and in the final weeks, weekly. Doctors were keen to balance keeping her son in utero for as long as possible so he could develop, and not keeping him in for too long in case his bowel started to deteriorate.

Michelle was induced at 37 weeks. Their son was born without complications and immediately taken to NICU where he was stabilised and his bowel (which measured 1.2 metres outside of his body) was put in a silo*. He had his surgery at 5 days, which lasted 5 hours and was a success. He was in hospital for a total of 2 months, as progress in NICU was not straightforward. His wound developed an e-coli infection, at another stage he developed sepsis and for several days his bowel appeared to be bleeding for no discernable reason. He was fed with total parenteral nutrition (TPN)* for several weeks until his digestive system was able to cope with milk. This was built up slowly and at two months he was able to come home. At the time of the interview, he was 3 months old. Michelle had been able to start breastfeeding him and he was thriving. He will need follow up checks at the clinic until he is two years old, but was doing well and enjoying family life with his big brothers.

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.

*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.

* Silo
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.

*(Total) Parenteral Nutrition (TPN)
TPN is nutrition is delivered directly to the blood via a vein.

Michelle said that leaving her son on the first evening was really difficult. She wanted to be there for every moment and know everything that was going on with him.

Michelle and Harry were warned their son might look quite shocking after his surgery. He was swollen and drowsy on morphine, but did not need to be given muscle relaxation medicine.

Michelle already had two sons at home, but it was daunting to bring her son home after his gastroschisis operation. The hospital encouraged her to take responsibility and prepare for home.

Michelle and Harry’s baby was in neonatal intensive care with gastroschisis. The relationships they built with staff were really important so they could be up to speed 24/7 about how their son was doing.

Michelle and Harry said they got used to the daily routine of visiting their son and seeing the doctors very quickly. It felt almost like going to work.

Harry and Michelle recalled seeing their son (with gastroschisis) set up in intensive care with a silo above his stomach.

Michelle and Harry were very lucky that their local hospital was where the specialist surgical team for their area was based.

Michelle and Harry were impressed by the natural birth they were supported in having, although the neonatal specialists were on hand the minute their son was born.

Michelle was promised a cuddle before her son was taken through to NICU

Harry and Michelle describe how the sonographer paused and told them she was about to burst their bubble.

Harry and Michelle were not prepared to be asked whether they wanted to terminate or not.

Harry and Michelle’s son had just been diagnosed with gastroschisis*. They wanted to know more about rates of success for the surgery and what the long term effects might be.

Harry and Michelle felt very well prepped for the birth of their son, who had gastroschisis*. They had seen the NICU, met the surgeons and were prepared for the induction.