Parents’ experiences of neonatal surgery

Hirschsprung’s disease - waiting for surgery

After a diagnosis of Hirschsprung’s disease* there is likely to be a period of waiting. Surgeons may not want to operate immediately but rather to wait until the baby is 2-3 months old (practice is variable but the trend is for earlier surgery). Parents we spoke to were told that this was for their baby to have time to gain weight and be able to cope with the surgery better. Babies are not always discharged during these weeks, but all the parents we spoke to had been able to take their baby home, although doctors monitored their health. 

Doing bowel washouts

Babies with Hirschsprung’s disease are not able to poo properly, so their bowels need to be washed out manually, often 2 or 3 times a day in the short term. This involves inserting a thin tube into the baby’s bottom and filling it with warmed saltwater solution, several times a day. This was started in hospital by nurses, but parents in some hospitals were taught how to perform this procedure themselves so they could take their baby home. Vanessa lived quite close to the hospital and staff said she could either bring her son in every day, or she could do it herself. Luke and Angie had quite a battle to get staff to train them how to do the washouts. They had to do their own research and staff seemed unaware that in other hospitals parents were taught how to do the wash outs and allowed to take their baby home. They felt the staff dragged their heels but were really glad they persevered. Although it took a long time each day, it meant their son’s quality of life in those weeks was much better than it would have been in hospital.
Daunting times

This was a time that was daunting and worrying. Leanne’s baby came home for about 6 weeks and she said it was awful having her daughter ill at home. She felt totally unprepared to be looking after a baby with Hirschsprung’s disease. Although she was given very good support from a community nurse and her GP, they were scary times.
During these weeks babies were regularly monitored for weight gain and infections. 

Limbo

James and Clare’s son was diagnosed later than most other babies in our sample. So his parents only had to wait a couple of weeks until his surgery. They remember them as very worrying times, with the “odd intermission”.
Alert for infection

Parents needed to keep a close watch for any signs of infection, as there was a risk that their baby could develop a condition called enterocolitis. This is like a severe tummy bug and is characterised by the development of a big bloated tummy, explosive diarrhoea and fevers. It can make infants with Hirschsprung’s disease very unwell. Leanne said it felt like “a real responsibility”. Vanessa remembers being given a medical alert card so that she and her husband could look out for warning signs. Some parents did experience a sudden deterioration, and a couple had to rush their baby to hospital. Although Donna and Matt were also able to care for their son at home for the few weeks before his operation, he did develop enterocolitis at one stage. He had to be re-admitted to hospital for a few days and put on antibiotics. But on the whole parents who did have their baby at home felt the staff were very supportive, available for them whenever they had a query.
*Footnote:

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 (pooing) normally.

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