RCH in the news

Zachary’s brave fight

Little Zachary Kelly can finally go home after spending his whole life at the RCH. Photo courtesy of the Herald Sun.

After spending his entire life at The Royal Children’s Hospital, Zachary Kelly defied the odds and went home last week.

The little fighter was born with a devastating condition, where parts of the left side of his heart did not form properly. The condition, known as hypoplastic left heart syndrome is so rare that just a dozen babies a year, from all over Australia, are treated for it at the RCH.

RCH cardiac surgeon Associate Professor Yves d’Udekem says babies with this condition are born without or with a very small left ventricular cavity, which is the chamber that pumps blood from the heart around the body.

Zachary’s illness was picked up in a routine scan 22 weeks into Mrs Kelly’s pregnancy, and she moved from Adelaide to Melbourne to give birth. Born at the Royal Women’s on November 30, he was transferred straight to the RCH, on the day the new hospital opened.

At two days old Assoc Prof d’Udekem and his team performed the first of three operations needed to save Zachary’s life.

Zachary’s illness was at the worst end of the spectrum because as a fetus, for reasons not fully known, a valve in his heart was completely blocked, leaving the walls of his main pumping chamber so thick, making it difficult for his heart to move well, Assoc Prof d’Udekem says. After his first operation Zachary’s heart was so weak he had an artificial heart doing its work for four days.

Mrs Kelly says: “They didn’t think he’d come off the (heart) machine … but he surprised them.”

The Kellys very nearly lost Zachary in the following weeks when he suffered a cardiac arrest. Assoc Prof d’Udekem says: “His heart was a big concern … for a long time we were not thinking that he would make it.”

“So there’s been a couple of times we’ve nearly lost him, but he’s a fighter, he’s a strong little boy, he keeps hanging in there,” Mrs Kelly says.

And with a name like his, why wouldn’t he? Zachary means remembered by God. “We wanted a really strong name, and Zachary is just that, we’d expect nothing less from him,” she says.

And he has lived up to his name. Since his last brush with death, he hasn’t looked back, going from strength to strength.

Words by Marianne Betts.

This is why we need to give

Two-year-old Aston Crow plays with his teddy at the RCH. Photo courtesy of the Herald Sun.

Aston Crow has been playing a waiting game that is nearly over.

The two-year-old is on the brink of a life-saving bone marrow transplant that will cure him of the rare leukaemia that has plagued him for more than eight months.

His five weeks so far at the Royal Children’s Hospital began with five days of chemotherapy to start preparing him for his risky transplant.

And since then doctors have been waiting for his little body to recover so he is strong enough to undergo a second round of chemotherapy, followed swiftly by the transplant, later this month.

RCH children’s cancer centre transplant head Dr Francoise Mechinaud said “He’s adjusting very well, he’s very well supported by his parents … he’s not scared, he is a happy child”.

Words by Marianne Betts.

Click here to read the full story on Aston on the Herald Sun website.

Good Friday is here!

RCH patient Declan Barrett. Photo courtesy of the Herald Sun.

Good Friday at The Royal Children’s Hospital

Our very first Good Friday Appeal at the new Royal Children’s Hospital (RCH) is shaping up to be one of the best yet with a number of special visits planned by TV celebrities, furry creatures and sports stars.

You can be part of it too. Tune into the Good Friday Appeal telecast on Channel Seven, pick up a copy of the Herald Sun and listen to 3AW and Magic throughout the day.


Channel Seven Evening News

See how the hospital is getting ready for this year’s Good Friday Appeal in Channel Seven’s Evening News broadcast live from the hospital at 6pm on Thursday 5 April.

From the hospital’s Main Street, Peter Mitchell presents the news. He will also be joined by sports presenter, Sandy Roberts and weather presenter David Brown.


Channel Seven Good Friday Appeal telecast

From 9am to 5pm, Channel Seven’s Nick McCallum and Jennifer Keyte will conduct interviews with patients, families and staff live from the hospital’s Main Street. 

Click here to see the Seven News coverage supporting the Good Friday Appeal.


Herald Sun lift out

Pick up a copy of the Herald Sun tomorrow. There will be a special Good Friday Appeal lift out featuring some of our patients.

Click here to read the Herald Sun coverage of the Good Friday Appeal.


3AW and Magic

Radio stations, 3AW and Magic will cross live to the hospital throughout the day to interview patients, families and staff.


Kids Big Day Out

For a day of family entertainment get along to the  Good Friday Appeal Kids Big Day Out at Etihad Stadium, Docklands.

The day features stars from the smash hit movie, Happy Feet Two, dancing duo Mumble and Gloria and Channel Seven celebrities.

There will also be a Teddy Bear Hospital – bring your Teddy Bear or a soft toy for a check up.

Find out more at www.goodfridayappeal.com.au/kids_big_day_out.

 

RCH Choir at 3.00pm

The RCH Choir is gearing up to once again play a special part in Good Friday celebrations at the hospital, by performing live on Channel Seven′s Good Friday Appeal telecast.


Wave goodbye at 4.55pm

Patients, families and staff will gather in Main Street for the hospital’s final wave goodbye to the TV audience.


Support the Good Friday Appeal

Visit the Good Friday Appeal website to donate or find out more.

 

Rowell’s lucky escape

Rowell Arnephy with sister Andrea and brother Rowan at the RCH. Photo courtesy of the Herald Sun.

Skateboarder Rowell Arnephy is all smiles after a miraculous escape when he was hit by a van crossing a road in Cranbourne North on Tuesday.

The 12-year-old is recovering in the Royal Children’s Hospital after sustaining an injury to his left eye, bleeding from an ear and grazes to his back and face.

RCH neurosurgical resident Dr Ella Ellwood-Shoesmith said the extent of Rowell’s injuries were being assessed. She advised skateboarders to wear helmets for protection.

Words by Marianne Betts.

Click here to read the full story on the Herald Sun website.

Drake is perfect in every way

Model Cassi van den Dungen with her son Drake. Photo courtesy of the Herald Sun.

Six-month-old RCH patient Drake Saul has recently had surgery to repair a cleft lip and palate. Drake’s mum Cassi van den Dungen from the 2009 series of Australia’s Next Top Model said motherhood had been an adventure.

“The best part has been seeing him smile” Cassi said.

RCH plastic surgeon David Chong said cleft palates occurred very early in pregnancy when for some reason the face didn’t completely fuse.

The four-hour surgery involved making Drake’s lip and nose as symmetrical as possible, Mr Chong said.

Cleft palates affect one in every 700 babies in Australia.

Click here to read the full story on the Herald Sun website.

Montana and the five-cent coin

RCH patient Montana Drew. Photo courtesy of The Age.

Four-year-old Montana Drew is finally able to eat an icy pole after Royal Children’s Hospital (RCH) surgeons removed a five-cent coin from her oesophagus last month.

Montana had been unwell for six-months after a holiday in Thailand with her family late last year. After months of vomiting up to 30 times a day, x-rays at the RCH finally revealed the cause of Montana’s mystery illness.

RCH surgeon Dr Joe Crameri said he sent a camera down Montana’s throat, but the scar tissue was so thick the coin wasn’t visible. A dye test revealed only a trickle of liquid could get through the blockage.

”I was absolutely gobsmacked,” said Montana’s mum Tania Martin. ”We were told the coin could have been swallowed years before.”

It took a seven-hour operation to remove the coin by cutting into the side of Montana’s chest and opening the oesophagus. And during a week in intensive care, Montana’s lung collapsed twice.

Montana is now doing well and is hoping to be able to eat Easter eggs when the Easter Bunny visits the RCH.

Click here to read the full story on The Age website.

A bond of love and faith

 

RCH patient Amelia Piper with her mum Jodie. Photo courtesy of the Herald Sun.

After being a patient at The Royal Children’s Hospital (RCH) for most of her childhood Jodie Piper has just discovered that her five-week-old daughter Amelia suffers from the same bone condition she has had her entire life.

The rare inherited condition known as Larsen’s syndrome causes joints to become loose and unstable, causing dislocations and other problems.

Click here to read the full story on the Herald Sun website.

A worldwide search for Fletcher’s donor

RCH patient Fletcher McLoughlan. Photo courtesy of the Herald Sun.

A bone marrow transplant from an overseas donor cured Royal Children’s Hospital (RCH) patient Fletcher McLoughlan’s rare immune deficiency condition known as Wiskott-Aldridge syndrome.

Five-year-old Fletcher had his transplant in 2010, spending time in intensive care and in isolation at the RCH. He then spent six months at home in isolation.

RCH bone marrow transplant physician Dr Karin Tiedemann said children with Wiskott-Aldridge syndrome was so rare, only one new case arose every couple of years in Victoria.

“He’s an amazing child. I kept wondering how he would cope being in isolation, but he was very resilient, and Thomas the tank engine helped a lot,” Dr Tiedemann said. “He’s been a spirited little lad ever since.”

Click here to read the full story on the Herald Sun website.

Australia’s first paediatric intestinal transplant

Mohamed recovering after transplant surgery. View full gallery below.

A 13-year-old boy has made Australian history by becoming the country’s first paediatric intestinal transplant recipient, in surgery performed at The Royal Children’s Hospital (RCH).

The complex, multi-organ operation – a collaboration between the RCH and Austin Hospital – was led by Austin Hospital surgeon Professor Bob Jones last week.

Mohamed El Shazly had intestinal failure due to gastroenterological condition ‘Hirschsprung’s disease’. Since infancy his condition has worsened and he’s spent much of his life as an inpatient at the RCH.

The ten-and-a-half hour surgery gave Mohamed a new liver, small bowel, pancreas and duodenum – and a second chance at life.

Professor Jones said the operation went smoothly.

“Pleasingly, the surgery went very much to plan. We removed Mohamed’s original liver and small bowel, but retained his original pancreas and duodenum. We then transplanted the four donor organs (liver, small bowel, pancreas and duodenum) as one package,” Professor Jones said.

“While Mohamed now has two pancreases and two duodenums, only the new organs will function,” he said.

The team then performed a second procedure days later to completely close the abdominal cavity once swelling had reduced.

For most of his life, Mohamed has been fed via a tube in his veins. Also known as parenteral nutrition, this method of feeding provides essential nutrients and fluid to sustain life and enable growth and development in patients who are unable to eat.

RCH Head of Clinical Nutrition, Professor Julie Bines, says intestinal transplantation offers Mohamed the possibility of achieving nutritional dependence.

“Whilst parenteral nutrition has been keeping Mohamed alive as he waited for a transplant, it is associated with potential life-threatening complications such as sepsis, loss of venous access, metabolic complications and liver disease.

“Not only does intestinal transplantation reduce these risks for Mohamed, we hope he will soon have the ability to satisfy his desire for food and eat just as an average boy does,” Professor Bines said.

RCH Head of Liver and Intestinal Transplantation, Associate Professor Winita Hardikar, says Mohamed is recovering steadily after last week’s operation.

“Mohamed is a courageous, resilient boy. He endured the operation well and is recovering as we’d hoped, but he does have a challenging journey ahead,” A/Professor Hardikar said.

“There is still a high risk the body will reject the new organs and infection is also possible. We need to monitor his progress closely and provide months of high level care before we can declare the surgery a success,” she said.

The RCH has been working in collaboration for some time with Austin Hospital on the development of an intestinal transplantation program.

A/Professor Hardikar said the development of intestinal transplantation at the RCH was a logical progression in meeting the clinical needs and expectations of patients with irreversible intestinal failure and their families.

“The Royal Children’s Hospital has spent the last 17 years building up our expertise in liver transplantation. We have well-trained medical and surgical staff and the ability to deal with complex illnesses. We also had the benefit of learning from the first adult intestinal transplant performed at the Austin Hospital in 2010,” A/Professor Hardikar said.

It was announced soon after the first adult transplant that the next intestinal transplant in Australia would be a paediatric one; however, the RCH waited nearly two years for organs from an appropriate donor to become available.

“Unlike other organ transplants, an intestinal transplant requires organs of equivalent or smaller size than the recipient. That’s in addition to the usual considerations, such as blood type,” A/Professor Hardikar said.

She said Mohamed’s journey has been the culmination of years of hard work from many departments across both the RCH and Austin Hospital.

“The teamwork required to keep Mohamed alive has been phenomenal. The medical, surgical, nursing and allied health support has included gastroenterology, clinical nutrition, intensive care, infectious diseases, interventional radiology and anaesthesia, just to name a few,” she said.

RCH Chief Executive Officer Professor Christine Kilpatrick says the surgery and ongoing complex care of patients with intestinal failure complements the national leadership position of the RCH.

“The Royal Children’s Hospital is already a nationally funded centre for paediatric heart, lung and liver transplantation. We hope to develop an intestinal transplantation program, in collaboration with Austin Hospital, which will have a significant impact on the futures of children with intestinal failure,” Professor Kilpatrick said.

“Importantly, we mustn’t forget that Mohamed has been granted a second chance at life thanks to the generosity of a grieving family. We wish to thank them sincerely, as we do all organ donors, for their selflessness during the most emotional of circumstances,” she said.

Mohamed was one of a number of patients in Australia in desperate need of an intestinal transplant. To register to become an organ donor, visit www.donatelife.gov.au.

Baby Alexandra home for the first time

RCH patient Alexandra McCann with her parents Emma and Paul. Photo courtesy of the Herald Sun.

Baby Alexandra McCann’s rough start to life is over – the seven-week-old is due home for the very first time tomorrow.

Parents Emma Barton and Paul McCann are overjoyed that their infant daughter, who has already had two major operations, will spend her first night at Thornbury in her own cot.

Alexandra was born with Pierre Robin Sequence, where her lower jaw was so small it caused life-threatening breathing problems.

At birth Alexandra was whisked straight to The Royal Children’s Hospital (RCH), where she was monitored before having jaw distraction surgery at four weeks, Ms Barton said.

Oral and maxillofacial surgeon Dr Jocelyn Shand attached metal devices to both sides of Alexandra’s jaw and linked them to adjustable rods.

The device will be removed in a month, and her cleft palate closed surgically when she is a year old.

Words by Marianne Betts.

Click here to read the full story on the Herald Sun website.