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Flintshire, Wales boy, 4, dies of mystery illness in Kenya - Hemolytic Uremic Syndrome (HUS) suspected

Ronan Kelly

Retired 2020
Flintshire boy, 4, dies of mystery illness in Kenya
by Kate Forrester, DPW West
Aug 6 2011
THE devastated parents of a little boy who died after contracting a mystery illness while on holiday in Africa have opened their hearts about their ?perfect? son.

Four-year-old James Devaney, known to family and friends as Jamie, died at Gertrude?s Children?s Hospital in Nairobi, Kenya last week.

The happy and healthy youngster had been ill for 12 days due to deadly toxins released into his body by an unidentified bacteria or virus, causing his organs to shut down

...

Avril, a nursing director at the Cheshire and Wirral Partnership NHS Trust, said: ?Jamie had not really been himself for a few days, but we were not really worried. We just put it down to the long flight and different food.

?Jim set off on his bike ride and we travelled to Kisiizi Hospital to meet him at the end. While we were there, Jamie started to suffer stomach pains and diarrhoea and he was seen straight away by a doctor. We hoped it was just a 48-hour bug, but by the third day we could see it was more serious.

?By that time, he had toxins in his body which were starting to affect his organs and cause internal bleeding.?

...

http://www.dailypost.co.uk/news/nor...s-of-mystery-illness-in-kenya-55578-29186966/
 
Re: Flintshire, Wales boy, 4, dies of mystery illness in Kenya

Re: Flintshire, Wales boy, 4, dies of mystery illness in Kenya

There are certainly enough exposures here to raise the specter of Ebola or Marburg infection, or for that matter yellow fever, typhoid, or leptospirosis. No information is given as to any pre-travel prophylaxis against malaria or yellow fever either.

No indication of what the evidence is for the idea that the agent was no longer present in him but left toxins behind, either (other than that they failed to detect the agent).

http://www.promedmail.org/pls/apex/..._BACK_PAGE,F2400_P1001_PUB_MAIL_ID:1000,89671

Archive Number 20110806.2377
Published Date 06-AUG-2011
Subject PRO/EDR> Undiagnosed illness - Uganda: child, ex Wales, RFI

UNDIAGNOSED ILLNESS - UGANDA: CHILD, ex WALES, REQUEST FOR INFORMATION
**********************************************************************
A ProMED-mail post
<http://www.promedmail.org>
ProMED-mail is a program of the
International Society for Infectious Diseases
<http://www.isid.org>

Date: Sat 6 Aug 2011
Source: Daily Post, North Wales News [edited]
<http://www.dailypost.co.uk/news/north-wales-news/2011/08/06/flintshire-boy-4-dies-of-mystery-illness-in-kenya-55578-29186966/>


The devastated parents of a little boy who died after contracting a
mysterious illness while on holiday in Africa have opened their hearts
about their "perfect" son. The 4-year-old boy died at Gertrude's
Children's Hospital in Nairobi, Kenya last week. The happy and healthy
youngster had been ill for 12 days due to deadly toxins released into
his body by an unidentified bacteria or virus, causing his organs to
shut down. The boy had been on holiday in Uganda with his mother and
father who was near the end of a charity bike ride to raise cash for
the country's Kisiizi Mental Health Hospital when the boy took ill.

His mother, a nursing director at the Cheshire and Wirral Partnership
NHS Trust, said: "My son had not really been himself for a few days,
but we were not really worried. We just put it down to the long flight
and different food. His father set off on his bike ride, and we
travelled to Kisiizi Hospital to meet him at the end. While we were
there, the boy started to suffer stomach pains and diarrhoea, and he
was seen straight away by a doctor. We hoped it was just a 48-hour
bug, but by the 3rd day, we could see it was more serious. By that
time, he had toxins in his body which were starting to affect his
organs and cause internal bleeding."

The boy was flown to Kenya to receive specialist treatment and began
to get better, giving both his family and doctors a shred of hope. "He
was taken off the ventilator and was responding to questions," said
his father, who abandoned his bike ride on the 4th day to be at his
son's bedside. "We hoped he was over the worst, but then we discovered
his other organs were affected. His doctors were devastated when he
died. Nurses were breaking down in tears." His mother added: "There
was nothing anyone could have done. Our son had a team of about 6
consultants, and they were all absolutely brilliant."

No one has been able to pinpoint what caused his illness, which could
have been picked up at home in Halkyn [his Welsh home]. "It could have
been caused by anything," Avril said. "We don't know if it was
something he ate or touched. By the time he was displaying symptoms,
the illness had left him; it was just the toxins that were still
there. Throughout it all, he was so brave. He never complained and had
so much dignity for a little boy of his age. He formed a special
relationship with everyone he met and was so kind. He loved being
outdoors and did everything with us. He even climbed mountains, he
would give anything a go. He loved animals and got to see a lion --
his favourite -- while we were in Uganda, which he absolutely loved."

The boy was due to start school at Ysgol Rhos Helyg, where he had
attended nursery, in September 2011. "It seems such a waste, but we
won't let it be," his father said. "We are planning to set up a
memorial fund in our son's honour and build new hospital facilities in
Uganda with the proceeds. Something good has to come from his death,
as he brought us so much joy. The boy's parents and his 17-year-old
twin sisters were overwhelmed with messages of condolence, which they
say have helped them through. A celebration of the boy's life will be
held at St Mary's Church, Halkyn, on 11 Aug 2011 at 11 AM.

[Byline: Kate Forrester]

--
Communicated by:
HealthMap Alerts via ProMED-mail
<promed@promedmail.org>

[This report lacks precise information about the deceased child's
symptoms and medical history, other than generalised statements about
stomach pains, diarrhea and general organ failure. The length of the
family's stay in Uganda is also unclear, and it is suggested even that
the child may have contracted his condition before leaving Wales.

Nonetheless, an apparently untreatable illness in Uganda raises the
specter of Ebola hemorrhagic fever (EHF). In general, outbreaks of EHV
have involved communities. However, recently in Uganda, a single case
of EHF was confirmed on 12 May 2011 after a 12-year-old girl from
Zirobwe Sub County in Luwero district died on 6 May 2011 at Bombo
Military Hospital. No other affected persons were identified other
than the index case, suggesting that perhaps the outbreak virus was
less contagious than previously circulating strains of EHF virus [see
ProMED-mail posts referenced below].

Further information would be welcomed from anyone familiar with the
case of this Welsh child.

Kisiizi Hospital is in southwest Uganda, between Kabale and Rukungiri.
It is in the Kigezi highlands and is about 5300 feet above sea level.
The HealthMap/ProMED-mail interactive map of Uganda can be accessed
at: <http://healthmap.org/r/0089>. - Mod.CP]
 
Re: Flintshire, Wales boy, 4, dies of mystery illness in Kenya

Re: Flintshire, Wales boy, 4, dies of mystery illness in Kenya

Here's the obit. The child died on July 25, after being ill for 12 days (post #1), so the onset date is around July 13.

Anyone who had contact with him at that point (or anyone else with the same exposure) is now beyond 21 days incubation period, and no other illnesses seem to have been reported, making Ebola or Marburg less likely.

http://www.yournotices.co.uk/10880326

Death
Published in the Leader on 5th August 2011 (Distributed in Mold)
This notice has had 119 visitors and has one candle..DEVANEY. - James Andrew, (Jamie) passed away peacefully at Gertrude's Hospital, Nairobi on Monday, 25th July, 2011, aged 4 years, with his parents Avril and Jim at his side. A treasured and much loved brother of Emily and Laura. He will be missed forever by his loving family. Funeral thanksgiving and celebration of Jamie's life will take place on Thursday, 11th August at St. Mary's Church, Halkyn at 11am. Please wear colour. Family flowers only please but donations may be given in Jamie's memory to Kisiizi Hospital Mental Health Ward, Uganda. All Inquiries to Peter Morris Funeral Directors, Chester Street, Mold. Tel 01352 700142.
 
Re: Flintshire, Wales boy, 4, dies of mystery illness in Kenya

Re: Flintshire, Wales boy, 4, dies of mystery illness in Kenya

Jim Devaney is the father of the child. This is the explanation for the charity in the obituary and the reason they were in Uganda to begin with.

http://www.chesterfirst.co.uk/news/104034/african-trek-will-aid-ugandan-hospital.aspx

African trek will aid Ugandan hospital

Published date: 05 July 2011 | Published by: By Robert Platt


--------------------------------------------------------------------------------

The Kisiizi Project Group (members of CWP and Kisiizi Hospital staff) outside the hospital's mental health unit.

Ewan Wilkinson and Jim Devaney prepare to tackle the ride across Africa.

TWO mental health workers will cycle across Africa this summer to raise money for a Ugandan hospital.


Jim Devaney and Ewan Wilkinson, both members of Cheshire and Wirral Partnership NHS Foundation Trust (CWP), will be joined by two other cyclists to ride across rural Uganda from Kampala to Kisiizi Hospital, a distance of 330 miles, to raise funds for the hospital?s mental health ward.
 
Re: Flintshire, Wales boy, 4, dies of mystery illness in Kenya

Re: Flintshire, Wales boy, 4, dies of mystery illness in Kenya

Certainly looks a lot less like Ebola.

It is possible, in hindsight, that the reference in the original post to a toxin might have been an indication that the Shiga toxin itself was detected, even though E. coli bacteria was not.

Also aruging against an Ebola diagnosis is that fact that the child may only have been in Uganda for about two days before taking ill, far shorter than the usual incubation time of Ebola, so the child may not have had time to be infected and take ill.

http://m.dailymail.co.uk/mobile/news/article.html?articleID=2023740

Boy, 4, dies of rare disease after going to Africa to support his father on sponsored bike ride Last updated at 3:32 PM, 8 Aug 2011

A four-year-old boy who travelled to Africa to support his father in a charity bike race died after contracting a rare disorder that shut down all his organs.
Jamie Devaney went with his mother Avril to watch his father Jim take part in the 330-mile ride to raise money for the Kisiizi Hospital, in Kabale, Uganda.
But the energetic infant contracted Haemolytic Uraemic Syndrome and, after initial treatment at the hospital his father was fundraising for, was taken to the Kenyan capital Nairobi - where he died.
His heartbroken parents, of Halkyn, Clwyd, have paid tribute to their smiling, blond-haired 'lovely and perfect' son, a 'remarkably kind little boy' who touched the lives of everyone he met.
Mrs Devaney said: 'Jamie just loved doing things. He was so full of life and energy. He used to go out on his tourer bike with his dad and waved to everybody he passed.
If he saw somebody who needed help he would always offer it. He was so special.'
The family had flown out to Uganda on July 11 after Mr Devaney, who works for the Cheshire and Wirral Partnership NHS Foundation Trust at the Countess of Chester Hospital alongside his wife, decided he wanted to raise £10,000 for the mental health ward at Kisiizi Hospital.
They enjoyed a day exploring a wildlife hospital before Jamie fell ill and had to be rushed to that hospital.
Mrs Devaney said: 'We hoped it would be a 48-hour bug but by the third day we could see it was something more serious.
'By the Saturday he was badly dehydrated and was being given IV fluids by the nurses.'
With Jamie's condition deteriorating Mrs Devaney contacted her husband, who was about 30 miles into his ride, and who returned to be by his son's side.

Doctors diagnosed Jamie as suffering from Haemolytic Uraemic Syndrome (HUS), a rare disorder which can cause the body's organs to shut down.
With Jamie's kidneys beginning to fail, the family travelled by ambulance to the Ugandan capital Kampala.
But on arrival at a hospital, doctors said they were unable to treat Jamie as they did not have dialysis for children.
They then flew the family by air ambulance to Gertrude's Children's Hospital in Nairobi, Kenya.
'The nurses and doctors were fantastic. They put Jamie on a ventilator but all they could really do was stabilise him and try to support his organs,' said Mrs Denavey.
'On the Friday we were given hope when Jamie woke up and started to respond. They took him off the ventilator and, although he couldn't speak, he could squeeze my hand and move so we knew he could hear us.
But his condition deteriorated again and Jamie passed away on Monday, July 25. We are not sure what caused his illness yet.'
Jamie attended the playgroup at Ysgol Rhos Helyg in Mold and was due to start in the reception class next month.
A funeral, thanksgiving and celebration of Jamie's life will take place on Thursday at St Mary's Church, Halkyn, at 11am.
Mrs Devaney added: 'He really loved school and used to get upset if it was closed and during the school holidays. One day we even had to take him to the school just to prove to him it was shut.'
The couple are also planning to set up 'The James (Jamie) Devaney Memorial Fund' in memory of their son.
 
Re: Flintshire, Wales boy, 4, dies of mystery illness in Kenya - Hemolytic Uremic Syndrome (HUS) suspected

http://www.promedmail.org/pls/apex/..._BACK_PAGE,F2400_P1001_PUB_MAIL_ID:1000,89723

Archive Number 20110809.2419
Published Date 09-AUG-2011
Subject PRO/EDR> Undiagnosed illness - Uganda (02): child, ex Wales, HUS

UNDIAGNOSED ILLNESS - UGANDA (02): CHILD, ex WALES, HUS
*******************************************************
A ProMED-mail post
<http://www.promedmail.org>
ProMED-mail is a program of the
International Society for Infectious Diseases
<http://www.isid.org>

Date: Tue 9 Aug 2011
Source: Daily Mail online [summ., edited]
<http://www.dailymail.co.uk/news/article-2023740/Boy-4-dies-rare-disease-going-Africa-support-father-sponsored-bike-ride.html>


The 4 year old boy who travelled to Africa to support his father in a
charity bike race died after contracting a rare disorder that shut
down all his organs. The boy went with his mother to watch his father
take part in a 330 mile [531 km] ride to raise money for the Kisiizi
Hospital, in Kabale, Uganda. But the energetic infant contracted
haemolytic uraemic syndrome [HUS] and, after initial treatment at the
hospital his father was fundraising for, he was taken to the Kenyan
capital Nairobi -- where he died.

[The boy was transferred by] air ambulance to Gertrude's Children's
Hospital in Nairobi, Kenya. But his condition deteriorated and he died
on Mon 25 Jul 2011.

--
communicated by:
Andrea Jones
<andrea@allaboutresources.co.uk>

[ProMED-mail thanks Andreas Jones for responding to our "request for
information".

Haemolytic uraemic syndrome (HUS) is a triad of microangiopathic
haemolytic anaemia, thrombocytopenia, and acute renal failure. It is
the commonest cause of acute renal failure in children and its
incidence appears to be growing worldwide.

Typical (or infection-induced) HUS is most commonly associated with
_Escherichia coli_ with somatic (O) antigen 157 and flagellar (H)
antigen 7 -- hence the designation O157:H7. It produces a toxin called
Shiga toxin or verotoxin -- hence, alternative names are Shiga
toxin-producing _E. coli_ (STEC) or verotoxin-producing _E. coli_
(VTEC). HUS is a systemic disease caused by damage arising from the
circulating toxin which binds to endothelial receptors, particularly
in the renal, gastrointestinal, and central nervous systems. Thrombin
and fibrin are deposited in the microvasculature. This occurs early in
the disease, prior even to the development of HUS and may be why
antibiotics confer no benefit. Erythrocytes are damaged as they pass
through partially occluded small vessels and subsequent haemolysis
occurs. Platelets are sequestered but without the cascade of clotting
factors as in disseminated intravascular coagulation (DIC).

Other pathogens may induce HUS, including bacteria such as
_Streptococcus pneumoniae_ and _Shigella dysenteriae_ type 13 as well
as some viruses such as human immunodeficiency virus and
coxsackieviruses. Atypical HUS can be caused by exposure to certain
medications (such as ciclosporin, tacrolimus), genetic mutations in
the complement pathway 4 and systemic conditions including lupus,
cancer, and pregnancy.

Haemolytic uraemic syndrome (HUS) is a rare disorder with an annual
incidence of 6.1 cases per 100 000 children aged under 5 years
(compared with an overall incidence of 1 to 2 cases per 100 000). Over
90 per cent of cases in children are secondary to infection. O157:H7
causes haemorrhagic colitis but only about 3-15 per cent of cases
progress to HUS. Cases may be sporadic or occur as part of larger
outbreaks. The largest documented outbreak in England occurred in
Cumbria in 1999, and was associated with pasteurised milk. It affected
114 people.

About 10 per cent of HUS cases are atypical and are not caused by
Shiga toxin-producing bacteria or streptococci. Patients without
evidence of underlying infection should be fully investigated, in
particular looking for complement gene mutations. HUS occurs worldwide
but is less widely reported in countries with less developed medical
services. (Extracted from Patient.co.uk
<http://www.patient.co.uk/doctor/Haemolytic-Uraemic-Syndrome.htm>)

This diagnosis leaves open the questions of the causation of the boy's
HUS. - Mod.CP

We have learned from a reliable source that there is no evidence of
Ebola in the region of Uganda where this took place. No other cases of
HUS have been reported from the hospital
. - Mod.LM]
 
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