NI mum raises concerns after Belfast Trust gives wrong blood test results

Emmie Knight underwent surgery when she was just six weeks old
-Credit: (Image: Submitted)

A mum from Northern Ireland has raised concerns after a referral was not made for her daughter to receive specialist treatment, and for being given a different child's blood test results.

Emmie Knight, who is 14 months old and from Limavady, first began experiencing reflux symptoms at four weeks old which quickly turned into vomiting and pain with every feed. She began to lose weight quickly, and her parents noticed symptoms of pyloric stenosis, a condition where the passage between the stomach and small bowel becomes narrower. A relative had the same condition so they were familiar with the symptoms.

At just six weeks old, Emmie underwent surgery at the Royal Victoria Hospital for Sick Children but her bowel was perforated during this. However, Emmie's diagnosis was still unclear.

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Speaking to Belfast Live, Ashlie said the family's concerns were exacerbated by a "period of unplanned consultant absence" in the paediatric gastroenterology service at the Belfast Trust earlier this year. In a statement, the Trust confirmed the service is now operational again and they are in the process of rescheduling appointments.

She said: "Doctors came to the ward after surgery to confirm it was pyloric stenosis and the perforation happened as the muscle wasn’t as thick as they thought and set the scalpel too long. They had to stop keyhole surgery and open it up to repair the perforation.

"When she came back to the ward she was so pale and she just looked dead, it was awful. The vomiting stopped for a couple weeks after that but around 24 hours after it, she started having uncontrollable diarrhoea, you were feeding her and it was coming through a few minutes later."

Ashlie said her daughter is fed four times a day through a feeding tube, which is still leaving her in extreme pain and causing painful bloating in her stomach.

While attempting to find a diagnosis for Emmie, Ashlie was shown blood test results with high infection markers. When querying why her daughter wasn't displaying such symptoms, it was discovered she had been shown the results of a different child.

Ashlie explained they were told Emmie was going to be referred to Great Ormond Street Hospital in London for testing and specialist treatment. She added: "That referral kept being brought up to us over and over again.

"Then different things happened along the way, someone else from the gastro team told us Emmie’s blood markers were sitting at 300 plus which is up there with sepsis and being really sick.

"We were kind of like, well then why isn’t she displaying symptoms of that? Why are they not starting an antibiotic?

"The gastro team then left the hospital for the day and the nurses said they hadn’t been told anything. We had to get a doctor to be able to go on and search up the blood results and found out we were given another child’s blood test results from the Royal."

Emmie was discharged from hospital in September 2023 without a diagnosis
Emmie has pain and extreme bloating after every feed

From June 2023 until Emmie was discharged without a diagnosis in September, Ashlie was told that her daughter was on a referral waiting list for specialist treatment at Great Ormond Street Hospital in London. However, after months of waiting, Ashlie reached out to GOSH directly and discovered such a referral had not been made.

To secure a referral, she was informed she would need to be referred to GOSH by a consultant on the gastroenterology team. However, upon trying to secure this earlier this year Ashlie discovered the gastroenterology team was not in operation due to "unplanned absences." In a statement to Belfast Live this week, the Trust confirmed the service is now operational again.

The Belfast Trust has issued an apology and said efforts are being made to reschedule appointments. In addition, they said they had been in touch with Ashlie to discuss any issues with regards to Emmie's care, but no such correspondence had been made at the time of publication.

A spokesperson for the Belfast Trust said: "The Gastroenterology service in the Children’s Hospital is operational again following a period of unplanned consultant absence. We appreciate the stress and anxiety this has caused and apologise for the impact on patients and their families.

"Every effort is being made to re-establish urgent outpatient clinics and we are working to ensure that any patients who have had appointments cancelled will be offered a rescheduled date as soon as possible. Belfast Trust has spoken with Ms McKnight [sic] and will continue to discuss any issues that she raises in relation to her daughter’s care."

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