Luke & Angie

Luke and his wife Angie’s third child was born at home. After 24 hours he was vomiting and had not passed meconium. They took him to hospital where he was diagnosed with Hirschsprung’s disease*. He had bowel surgery at 2 ¬¨¬®≈í¬© months and is now doing well.

Luke and his wife Angie were thrilled when their third child, a boy, was born at home. He seemed to be well at first but over the first 24 hours they became increasingly concerned about him. He had not passed his meconium and was vomiting bile. When he vomited green bile at around 36 hours old, they decided it was time to take him to hospital. They initially went into their local hospital but were soon transferred to a more specialist centre because he needed to be in neonatal intensive care (NICU)* while doctors ran tests.

Their son was diagnosed with Hirschprung’s disease*, and Angie and Luke were told that he would need to be allowed to grow for 2-3 months before he was strong enough for the operation. He stayed in hospital for a week while the tests were run, and they were taught how to perform his twice-daily bowel washouts. Then Luke and Angie were allowed to take him home until it was time for his operation. While he was at home they received regular visits from the health visitor and had to call into NICU regularly with his weight progress, and go for check-ups. At first their son had some difficulty establishing breastfeeding, but a consultation with a lactation expert helped them overcome these difficulties.

When he was 2 ¬Ω months old, their son had put on enough weight to be able to have the operation. It was 5 hours long, but a success. Only 10cm of bowel needed to be removed. Their son was 19 months old at the time of the interview and progressing very well.

* Hirschsprung’s Disease
A rare disorder of the bowel, where the nerve cells do not develop all of the way to the end of the bowel. The section of bowel with no nerve cells cannot relax and it can lead to a blockage. Babies all need surgery and may have ongoing problems with stooling normally.

*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.

Luke and Angie were shocked by how expensive parking and eating at the hospital was.

Luke and Angie didn’st like information being drip fed to them, but rather wanted a straight answer to a straight question.

When Luke and Angie rushed their new baby into hospital, they didn’st see their older daughter for several days, which they feel traumatised them. They now have regular conversations about what a frightening time it was for them.

Luke and Angie said the hospital were very supportive at allowing their two older daughter to visit their son when he was in hospital with Hirschsrung’s disease.

Angie and Luke had request specifically that they would allowed to stay with their son until he was asleep, and so were distraught when told they would have to hand him over at the door.

Luke and Angie described a really good open access policy for their son who had Hirschsprung’s disease in their local hospital, which was also a specialist surgical centre.

Luke and Angie said the washouts did take a long time, and took over their lives. But they were far preferable to him being in hospital.

Luke had to battle with staff to be allowed to stay by his son’s side. But it was very important to him that his son had someone with him during a traumatic time.