Getting ill and diagnosis of other conditions needing neonatal surgery

In addition to gastroschisis*, exomphalos*, Hirschsprung’s disease* and Necrotising Enterocolitis NEC* (covered in other summaries) there were other conditions that babies developed, meaning they required surgery shortly after birth. Some of these conditions were picked up in antenatal scans, others were only discovered after birth. Parents’ experiences are described here.

Congenital Diaphragmatic Hernia (CDH)

We spoke to three parents who had a baby with a diagnosis of CDH*. Julie was told at a scan when her baby was 20 weeks. She had never heard of the condition and was devastated by the news. It was Easter time so she had to wait until the following week to find out more about the condition and her son’s prognosis.

And when we came away, it was Easter so then we had to go through Easter without any information whatsoever, just completely torn apart. And we came back we went on the internet and tried to look things up but like I say there wasn’t, there wasn’t back then the information what there is now, there wasn’t a CDH you know, charity and all things like that so yeah it was quite hard, we were, you know, really distraught, spent days crying.‘ Julie

Alix and Antonio had their baby naturally in hospital and had no inkling that there was anything wrong until he was born. He became extremely unwell very suddenly. Their son was covered in meconium and not breathing well. The crash team were called and their son was taken to neonatal intensive care (NICU)*.

Alix and Antonio feared they were about to get more bad news when a pediatrician and several nurses took them to a quiet room. They were told their son had CDH, would need surgery and need to be sent to another hospital. They were stunned. It was very confusing to first-time parents not used to navigating the health system, and there was a lot of information to take in very quickly.

For Alix and Antonio it was confusing and scary to hear such bad news. The doctor was very precise about what would happen next, and went to try and find a hospital they could send their baby to.

Before he was transferred to the next hospital where there were specialist pediatric surgeons to care for their son, Antonio and Alix met with the consultant. He explained the condition again, gave them more information about the surgery their son would need and his survival chances. They were told CDH only had a 50% survival rate. ‘That was probably our first time where we actually started to put our feet on the ground and think, this is just starting. This is not going to be those 3 or 5 days in hospital, this is not going to be just surgery and go home. This is going to be a long journey.

Other conditions affecting the bowel

Rebekah had her third daughter by caesarean. Everything seemed fine until she started vomiting brown and then green bile. The 20 week scan had picked up some swollen loops in her intestine (an echogenic bowel), so doctors were immediately alarmed. She was tested for several conditions, including cystic fibrosis, but in the end was given a diagnosis of intestinal (jejunal) atresia*, a blockage in her small intestine that needed surgery.

Everything was perfect with Rebekah’s third daughter until she started vomiting green bile.

Emma had her son at 33 weeks and doctors immediately discovered he had not grown well in the womb and not breathing well. She was told he had a join between his windpipe and gullet called a tracheoesophageal fistula (TOF) and a blocked gullet, called an oesophageal atresia (OA)* and would need immediate surgery.

Emma’s baby was born at 33 weeks and she didn’st see him for 6 hours as doctors stabilised him. She was then told he needed immediate surgery.

Age at interview 30

Age at diagnosis 28

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Adam and Sonya’s daughter developed a hernia* on her ovary when she was three weeks old. She needed surgery to remove it.

No clear diagnosis

Mary had a placental abruption and had her son arrived early. He seemed fine at first but then doctors grew concerned about his blood sugar levels and vomiting. He was sent to intensive care (NICU), and after a couple of days transferred to the nearest hospital that had a pediatric surgical team. They scanned him and performed exploratory surgery to see if there was a blockage.

Mary didn’st realise how ill her son was. They were concerned about his swollen, tender tummy and so performed an operation.

Age at interview 42

Age at diagnosis 41

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Her son was given a stoma* which was reversed by another operation several weeks later. They ran lots of tests but never reached a diagnosis, which is a very unusual scenario. Although Mary would have liked a diagnosis to be clear what the problem had been, in fact they ruled out several very serious conditions so she has learnt to be happy with the diagnosis.

Mary said she doesn’st think they will ever really know what was wrong, but tests for several serious conditions came back negative, so there was room for celebration.

Age at interview 42

Age at diagnosis 41

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Joanne’s daughter was born healthy but at 10 weeks became seriously unwell. She suffered a blood loss to her bowel which meant that it started to develop NEC. Surgeons had to remove the infected sections leaving her with a short bowel.

*Footnote definitions

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.

An abdominal wall defect that occurs when the baby’s tummy wall does not develop fully in the womb. Some of the baby’s intestines and sometimes other organs such as the liver, develop outside the tummy and are covered by the umbilical cord.

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.

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.

Congenital Diaphragmatic Hernia (CDH)
A hole in the diaphragm, the sheet of muscle that separates the chest and abdomen.

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.

Intestinal Atresia (Duodenal, Jejunal, Ileal or Colonic Atresia)
The term atresia refers to the situation when a baby is born with a blockage in the intestines. This may be a narrowing or a complete obstruction. The blockage may be single or multiple. Three areas of the small bowel may be affected: the duodenum, jejunum or the ileum. When the large intestine is blocked, this is known as colonic atresia.

Oesophageal Atresia (OA) with Trachea-Oesophageal Fistula (TOF)
OA is a rare condition where the oesophagus (gullet/foodpipe) is not connected to the stomach and is blocked. This can be associated with TOF, where the oesophagus (gullet/foodpipe) is joined to the trachea (windpipe).

A hernia occurs when part of the body (usually the intestine) protrudes into a place where it should not be. An inguinal (groin) hernia in babies happens when a sac that joins the tummy to the scrotum or labia does not close, allowing the bowel (or ovary) to bulge into it.

Surgeons may divide the bowel in an operation and bring the two ends out onto the tummy wall. This is usually a temporary situation to help the intestines or bowel rest and heal. Faeces (pooh) passes into a bag attached to the outside of the body.