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Monday, 22 December 2014 08:21 am

Sick boy’s mother warned about her ‘incorrect comments’

A WELLINGTON Hospital doctor treating a boy with a rare condition has written to his mother asking her to correct her public comments about her son’s disorder and medical needs, or face consequences.

Clinical Leader of Paediatrics for the Children’s Health Service and Wellington Children’s hospital, Dr Andrew Marshall, sent a letter to Michelle Lemon last month.

In it he expressed concern over what he described as Ms Lemon’s “misleading and factually incorrect statements” being made through a NewsWire article about her son, Elijah’s, case.

“We raise these issues with you, as a matter of public interest, and the interests of Elijah,” says Dr Marshall in the letter, dated November 5.

Michelle Lemon (right) spoke to NewsWire in September about her fundraising efforts for Elijah (right) to see a private urologist for his Prune Belly syndrome.

In the article she said Wellington Children’s hospital did not have an urologist and she wanted her son to have surgery she claimed had not been offered, comments which Dr Marshall disputes.

“There are surgeries and tests that could help him, but these have not been offered through the public health system,” said Ms Lemon in the article.

However, in the letter Dr Marshall says Elijah is not being denied treatment due to cost and he says all three paediatric surgeons in Wellington are trained in urology, including one doctor who gives Elijah on-going review.

Elijah, 3, was born with prune belly syndrome, characterised by absent or deficient abdominal muscles, a condition 50 per cent of children die from by the age of two.

His mother says he has one failed kidney and suffers from urinary tract infections because he often cannot pass urine.

She wants a surgical procedure for him so she can drain his bladder, because she says he can go for up to five days unable to pass urine.

Dr Marshall says all four doctors who had reviewed Elijah’s case were unanimous that he did not require that type of procedure.

“…there is no objective information as to how often Elijah empties his bladder,” he says, adding that such a procedure is associated with potential complications.

However, a facebook page Ms Lemon set up, to follow the highs and lows of Elijah’s journey with multiple rare disorders, has photos of him crying from “another urinary tract infection”.

A video on the page shows Elijah’s eyes rolling back in his head that she says is from the pain of not passing enough urine.

The letter from Dr Marshall also draws attention to some collection boxes set up to fundraise for Elijah.

“Staff have noted that there are collection boxes at the Kilbirnie Warehouse and Kilbirnie Pharmacy,” he says.

Although it is not illegal for Ms Lemon to fundraise for her son, Dr Marshall points to conversations that were allegedly overheard at the pharmacy.

“We also understand that at Kilbirnie pharmacy the staff have been overheard telling members of the public that Elijah needs a kidney transplant.”

Lyall Bay Warehouse says it could not comment because the matter had become a “heated debate”.

One Kilbirnie pharmacy says it had never heard of Elijah, while the other, where Elijah is a patient, says it never had a collection box and had not told the public he needed a kidney transplant.

Prune Belly Syndrome Network’s website in the US says most children with the condition have abdominal wall reconstruction: a tummy tuck or muscle transposition.

In the NewsWire article Ms Lemon mentioned muscle transposition surgery as a possibility for Elijah in the future.

Dr Marshall responded in the letter to this point, saying Elijah did not need it as he is: “now walking and making good progress with his motor skills”.

“As such this surgery will not be required and it is not helpful for Elijah now or in the future, even if it were available in New Zealand,” he says.

The US website also said that because children with the syndrome will “likely have some degree of kidney and/or urinary tract problems, [parents] should find a paediatric urologist who knows about Prune Belly Syndrome”.

Ms Lemon says in the article she would like Elijah to have a paediatric urologist to oversee his case and is seeking this in the private sector.

The November 5 letter ends asking Ms Lemon to explain or amend her comments, or action will be taken.

“I kindly request  that you either contact us and explain why you continue to make these statements which we believe are clearly misleading or that you immediately correct the misrepresentation.

“If you fail to do so within the next week we will have no choice but to forward a copy of this letter to all relevant organisations.”

Capital and Coast District Health Board has declined to comment on Ms Lemon’s case.  Ms Lemon says since receiving the letter she has not heard another word from them.

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  1. “Elijah, 3, was born with prune belly syndrome, characterised by absent or deficient abdominal muscles, a condition 50 per cent of children die from by the age of two.”

    I assume you mean “50% of children with this condition” or “50% of affected children”, not 50% of all children.

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