Baby dies after illness was misdiagnosed as cow milk allergy

Clodagh McKeon

“Nailah was the most adorable child who didn’t deserve to suffer”

A baby girl died after doctors in the UK thought her feeding issues were due to a cow’s milk intolerance.

Nailah Ally was born in October 2019 in West Sussex. Shortly after she was born, she was diagnosed with necrotising enterocolitis (NEC) – a serious illness which sees the gut become inflamed and start to die.

She was also diagnosed with a hole in her heart when her mum was pregnant.

She was always in and out of hospital with a swollen stomach and when she was admitted on December 28th 2019 she recieved treatment for suspected sepsis.

When in hospital doctors failed to perform a barium enema. This is a test that helps to highlight the large bowel so it can be seen clearly on an X-ray.

The test would have helped doctors consider the possibility that her intestine could have narrowed because of the damage caused by NEC.

Baby Nailah was sent home from East Surrey hospital on January 7th 2020 but had a follow-up appointment set for three days later.

The next day, she went into septic shock and an X-ray showed a suspected perforated bowel. Her condition worsened and she died on January 13th 2020.

A post-mortem examination found that the baby girl died from multiple organ failure caused by NEC and a narrowing of the intestine.

Nailah’s parents, Laila Tobota and Emmanuel Ally, asked lawyers at Irwin Mitchell to launch an investigation into her care under Surrey and Sussex Healthcare NHS Trust, which runs East Surrey Hospital.

The legal team carried out an NHS investigation and it showed that a consultant believed Nailah might have had an intolerance to cow’s milk and changed the formula she was feeding on.

Nailah’s mum Laila said her daughter was a “fighter” but that some of the staff at the hospital “were dismissive of our needs” and claimed her daughter’s feeding issues were often put down to “milk intolerances”.

She said: “It felt like Nailah’s feeding issues were often put down to milk intolerances rather than the focus being on her medical needs.”

“While it’s three years since Nailah died the hurt and pain we feel is still as raw now as it was then.

“She was the most adorable and beautiful child who didn’t deserve the suffering she had to go through in her short life. Nailah was an absolute fighter and so brave until the end.

“We can’t thank the heart surgeons enough for everything they did to help her.”

A spokesperson for Irwin Mitchell, said that the Trust had paid an undisclosed out-of-court settlement to Nailah’s parents to help them access the specialist support they needed after her death. However, they did not admit liability.

The spokesperson said: “A root cause analysis investigation report by the Trust found there was a failure to perform barium enema, which in retrospect, may have found Nailah’s narrowed intestine which she suffered ‘due to her episode of necrotising enterocolitis.'”

“The failure to perform the test was down to poor documentation, poor face-to-face handovers between doctors and poor ownership of Nailah’s case by one named consultant.”

A spokesperson for Surrey and Sussex Healthcare NHS Trust said: “We are very sorry for the experience Nailah’s family had at East Surrey Hospital and our deepest sympathies remain with them at this very difficult time.

“We take any death extremely seriously and as a trust we have already investigated and put in place a thorough action plan to ensure we learn the lessons needed, and importantly, improve our care for future patients.”