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SA toddler misdiagnosed with constipation instead of rare condition Langerhans cell histiocytosis

Young mum Leyneaka Maigler had no reason to disbelieve doctors when they told her that her two-year-old daughter was constipated. Sadly, they were very wrong.

Two-year-old Starlee Holley, who has been diagnosed with a rare condition called Langerhans cell histiocytosis, with her mum Leyneaka Maigler. Picture: Supplied
Two-year-old Starlee Holley, who has been diagnosed with a rare condition called Langerhans cell histiocytosis, with her mum Leyneaka Maigler. Picture: Supplied

When doctors diagnosed Leyneaka Maigler’s two-year-old daughter with constipation, she had no reason not to believe them.

In August, the Paralowie mum brought Starlee Holley into the Lyell McEwin Hospital where they conducted an X-ray and sent her home with the diagnosis.

But when little Starlee continued to complain of a sore tummy and even developed a lump on her neck, Ms Maigler couldn’t sit by any longer.

She brought Starlee back to the hospital in mid-September for more answers and was transferred straight to the Women’s and Children’s Hospital.

“They found out there were lesions on that X-ray (taken in August),” the 22-year-old said.

“It sucked because obviously it would’ve been dealt with earlier.

“I was upset about it, because I thought it was nothing serious, it was put down to constipation.

“If I didn’t take her back to the hospital, they would’ve still been growing.”

Starlee was originally brought to the Lyell McEwin Hospital and they sent her home after treating her for constipation. Picture: Supplied
Starlee was originally brought to the Lyell McEwin Hospital and they sent her home after treating her for constipation. Picture: Supplied
Starlee was brought back and subsequently diagnosed with Langerhans cell histiocytosis after she was transferred to the Women’s and Children’s Hospital. Picture: Supplied
Starlee was brought back and subsequently diagnosed with Langerhans cell histiocytosis after she was transferred to the Women’s and Children’s Hospital. Picture: Supplied

It was at the Women’s and Children’s Hospital where Ms Maigler was dealt the most devastating news. Her daughter has an extremely rare cancer-like condition called Langerhans cell histiocytosis.

“I cried my eyes out, I didn’t want to believe it was true … you don’t think that’s going to happen to your kid,” the Paralowie mum said.

“It turned my whole world upside down, it turned all our world’s upside down … it hurts us all.”

Starlee has lesions on her lungs, liver and bones, requiring up to 24 months of chemotherapy to treat.

Starlee is currently undergoing six weeks of chemotherapy. Picture: Supplied
Starlee is currently undergoing six weeks of chemotherapy. Picture: Supplied
She has lesions in her lungs, liver and bones. Picture: Supplied
She has lesions in her lungs, liver and bones. Picture: Supplied

Ms Maigler claimed when she brought her daughter in the first time to the Lyell McEwin Hospital, the staff missed the lesions on the X-ray.

She said they used the same X-ray to find the lesions and conducted further tests to confirm the diagnosis of the condition.

The hospital has apologised for any distress, saying the rarity of Starlee’s condition made the diagnosis “very difficult”.

Since the diagnosis, Starlee had to undergo an operation to install a line for her chemotherapy.

During the operation her heart stopped.

“She had to be resuscitated for 14 seconds,” her mum said.

“(It) was so f**king scary.”

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When she was undergoing an operation to install a line for her chemotherapy, Starlee’s heart stopped. Picture: Supplied
When she was undergoing an operation to install a line for her chemotherapy, Starlee’s heart stopped. Picture: Supplied
Ms Maigler said her daughter complains of a sore stomach all the time. Picture: Supplied
Ms Maigler said her daughter complains of a sore stomach all the time. Picture: Supplied

Now Starlee is undergoing chemotherapy once a week.

Ms Maigler said her daughter complains of a sore stomach all the time and struggles to go to the toilet.

“It’s horrible, I’m still in shock … I just try to stay strong for my daughter and I’m going to be here no matter what,” she said.

A Northern Adelaide Local Health Network spokesman said “we have spoken with the family and apologised for any distress caused”.

“LCH is a rare condition with just five children per million affected,” he said.

“Involvement of the lung is uncommon – about 10 per cent of affected children or one in two million – making the diagnosis very difficult.

“The patient presented to our ED with complaints of abdominal pain. Nothing of concern in the abdominal area was found, however a follow up ultrasound was advised.

“When the patient represented to our ED on September 5, 2024 with new symptoms, we arranged further investigation.

“This confirmed a diagnosis of LCH and the patient was placed on an appropriate treatment plan.”

If you want to donate to Starlee, you can here.

Originally published as SA toddler misdiagnosed with constipation instead of rare condition Langerhans cell histiocytosis

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Original URL: https://www.dailytelegraph.com.au/news/south-australia/sa-toddler-misdiagnosed-with-constipation-instead-of-rare-condition-langerhans-cell-histiocytosis/news-story/9ff2b0c90bbe084ee95294909c22b0be