Parents’ experiences of neonatal surgery

Hirschsprung’s disease - getting ill & diagnosis

One of the more common congenital* anomalies that require surgery in the first year of life is a bowel condition called Hirschsprung’s disease. This is 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.

Hirschsprung’s disease is a condition not picked up by antenatal scans, and only becomes apparent after the baby has been born. We interviewed the parents of 6 babies who had Hirschsprung’s disease.

Early signs of Hirschsprung’s disease

All the babies were born well, but parents started to notice that things were not right within either the first few hours or days. Symptoms included not feeding well, being sleepy or “floppy”, not having passed their first poo (known as meconium) and throwing up green vomit or bile. These signs are the result of a failure of the lower part of the bowel to relax properly to allow poo to pass through. 

Vanessa took her son home, but became worried about him and took him back to hospital the next day. He was vomiting green mucus and was admitted for tests. Luke and Angie had their third baby at home, but were soon noticing worrying signs – no meconium and not feeding well. They took him into hospital. Leanne gave birth in a local midwifery unit and took her daughter home after just a few hours. But over the next couple of days she felt that things weren’t right – the baby wasn’t feeding well and was throwing up mucus. She asked the midwife at her local GP surgery to look at her baby, and she was then sent to the local hospital.
Some parents were still in hospital when they or midwives noticed worrying signs. When Lucy and Jason’s son started vomiting green sick they found things escalated quickly.
Transfer to hospital or specialist centre

While some parents were fortunate to already be in a hospital that had staff who could diagnose Hirschsprung’s disease, others had to be transferred quickly. Matt and Donna were in a hospital large enough to have a neonatal intensive care unit (NICU)*, but after an x-ray showed he had a blockage in his bowel they were told he was going to be transferred to a hospital that had specialist pediatric surgeons. Both Leanne and Vanessa had previous experience of NICU with their first baby. For one, that experience made them feel better prepared, for the other there was a heart-sinking moment of “not again”.

Diagnosis of Hirschsprung’s disease

Initially babies with Hirschsprung’s disease presented with a bowel blockage that needed to be cleared (mostly by a wash out). Parents were told their baby’s condition was likely to be one of three things. The blockage was either a one-off, cystic fibrosis or Hirschsprung’s disease.
But a definitive diagnosis of Hirschsprung’s disease required a biopsy and results took a week or more to come back. Several parents were very upset by their baby being whisked away for tests, and some found the biopsy distressing. Matt and Donna said they had to leave the room, but Luke and Angie were treated differently and were upset to be told to leave the room. 

“Okay we are now going to take your baby through here and do things behind these doors and we said, ‘Well we’re coming with him,’ they said ‘Well we’re not really set up for that,’ and went ‘Well we don’t care we are not leaving our child,’ and that was a real theme to some as a real shock to the system.”Luke
Sometimes Hirschsprung’s is hard to pick up, as it can present as severe constipation if the baby appears to otherwise be doing well. Clare and James were very frustrated that it took them 8 months before they got a diagnosis for their son. He was a good weight but never really pooed properly and his tummy was very distended. Despite repeatedly voicing her concern, Clare felt she was not listened to.

I was a new mum and, well, our views, were being dismissed as new parents, when we were saying there was something wrong, there’s something wrong you know right from those early couple of days right through, and really right up to the point of diagnosis at 8 months.” Clare
But it still took another few months before they were finally given a diagnosis, and even this took two biopsies as the first was inconclusive.
See also ‘Hirschsprung’s disease - waiting for surgery’.

*Footnote definitions:

Congenital
A congenital disorder, means it is present at birth, sometimes known as a birth defect, is an error of development that occurs before 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.

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