Michael, Cameron and Abbie

Michael, Cameron and Abbie

Links to the beginning of the journey .. and info on his siblings heart conditions

Sometimes it is easy to “forget” that Cam has a serious heart condition and obviously someone forgot to tell him as he has more energy than many of us put together & such a zest for life … I remember seeing somewhere a slogan -“ Half a heart – not half a life” and this is certainly true for Cameron.

We hope you enjoy reading his story and that it will give you some hope with the obstacles you may face …

What is Hypoplastic Left Heart Syndrome (HLHS)?

Hypoplastic Left Heart Syndrome (HLHS) is a Congenital Heart Defect where the left side of the heart has failed to develop properly. There are varying degrees of malformation in the Hypoplastic Left Heart. The left ventricle is usually very small or non-existent. The aortic valve may be narrowed or closed and the aorta itself may also be very small. The left atrium is sometimes small and the mitral valve between the left atrium and left ventricle can also be narrowed or closed. These defects put extra work on the right side of the heart, so chambers and blood vessels on this side may be enlarged or stretched larger than normal.


To see the start of Cam's (and our) journey with his heart please
follow this link ...

Cameron's Hearts of Hope web-pages
Some of the photos and story you may find graphic, just to let you know.

Cameron’s twin brother Michael

Michael was also born with a congenital heart defect (CHD) called Pulmonary Stenosis. Up until the age of 2 Michael was monitored 6 monthly by echos and Paediatric visits and then at the age of 3 he was discharged as the Stenosis had corrected to an acceptable level so that it was classified as mild.

What is Pulmonary Stenosis (PS)?

This is where the Pulmonary Valve is thickened and narrowed leading to the development of abnormally high pressure in the right ventricle. The right ventricular wall becomes thickened ("Hypertrophied"). Stenosis (narrowing) of the pulmonary valve restricts flow into the pulmonary arteries. This leads to the presence of a heart "murmur". Often the narrowing is mild and does not put significant strain on the heart

Cameron’s sister Abbie

In August 2006 Abbie was given an echo to check out her heart "as a precaution" due to the severity of Cameron's heart condition & Michael's condition. Unfortunately we were given the news that Abbie has a congenital heart defect (CHD) called Aortic Stenosis. At that stage it was classified as a mild case at this stage caused by thickened leaves of the valve but because of the nature of aortic valves and she had to have frequent echos to ensure that it doesn't get worse, and just stays the same.

Unfortunately with the last echo in 2009 the Stenosis had worsened and has become mild-moderate and she will be reviewed again before she goes to school to decide whether she will need the corrective surgery on the valve. It seems that like Cam that her valve is bicuspid (the valves should have 3 leaves but both Cam and Abbie have only 2).

Aortic Stenosis

The Aortic Valve is thickened and narrowed leading to the development of abnormally high pressure in the left ventricle. The left ventricular wall becomes thickened ("Hypertrophied").

Stenosis (narrowing) of the aortic valve restricts flow into the aorta. This leads to the presence of a heart "murmur". Often the narrowing is mild and does not put significant strain on the heart.

However the narrowing frequently worsens with growth. If the obstruction is severe, symptoms may develop, or the heart may show evidence of "strain". The valve may require treatment to open it up. This may be surgical or with the use of a "balloon catheter" procedure.

SELECTIVE MUTISM

Abbie was diagnosed with Selective Mutism in March 2011 .. following 2 years of kindergarten where she never uttered a word .. towards her going to school she was referred to Special Education and support is now given to her at school.

What is selective mutism?
Selective mutism is a severe anxiety disorder that 7 in 1000 children suffer from (the same prevalence as autism spectrum disorder). People with selective mutism have social or other anxiety so extreme that they are physically unable to speak or otherwise communicate in certain situations, usually school and other social situations, despite being perfectly able to speak and displaying normal social behavior in others, usually home and sometimes a trusted friend's house. The "talk" and "non-talk" zones are different for every sufferer -- for instance, some may speak to friends at school but not answer questions -- and some find it easy to communicate nonverbally or even whisper in no-talk situations while others are all but paralyzed. Some children grow out of their anxiety, while others begin to speak but develop social phobia and still others enter adulthood unable to speak to most people.

"Selective mutism" is far better than the former name, "elective mutism," but it unintentionally perpetuates two misconceptions: that the child can "select" which situations to speak in and that the disorder centers around mutism. In fact, people with this disorder have no control over when they can or cannot communicate (and very much wish they did), and mutism is only the most visible symptom. Most, though not all, selectively mute people have trouble nodding, pointing, smiling, writing, looking somebody in the eye, or using various other methods of communication when they are nervous. Many therapists and parents fail to realize that these anxieties must be overcome before the sufferer can even consider whispering, let alone speaking. Furthermore, "selective mutism" makes no mention of the anxiety that causes the problem, leading to confusion about treatment methods.

This disorder is not terribly rare, yet most child psychologists and speech therapists have never heard of it, do not understand what it is, or have no idea how to treat it. Some children with selective mutism are incorrectly diagnosed with autism or mental retardation. The majority of them are punished for their failure to speak, since their parents and teachers assume that they are able to do it in all situations and that they are simply being stubborn. This makes the child far more anxious about situations in which they will not be able to speak and lowers their self-esteem as it is constantly being pointed out that they are unable to do something that "should" be easy for them. Many children with selective mutism grow up to adults with multiple severe anxiety disorders, depression, eating disorders, and/or substance abuse. However, selective mutism can be cured with cognitive-behavioral and/or speech therapy, medication in some cases, and understanding and support from family, friends, and school officials. Children who had the benefit of early intervention can grow up up to be confident adults.

QUILT OF LOVE

Visit Cameron's Quilt of Love ... here

CHD QUILT
Here is the link to view Cameron's square on the CHD Quilt .. (Quilt 32 Row 6 Square 4). Michael's square (Quilt # 49 Row 6 Column D) is not online .. but is made.

Blog Updates
The latest updates are at the top .. and the oldest are at the bottom.

Saturday, June 20, 2009

Artificial heart design by Queenslanders a world first

Article from: The Sunday Mail (Qld)

Suellen Hinde

June 21, 2009 12:00am

QUEENSLANDERS have created the world's first artificial heart which fits inside a human body and can mimic the pumping fluctuations of a healthy heart.

The titanium device – which is about the size of a fist – will provide an alternative to heart transplants, doctors say. It has the potential to save thousands of lives a year worldwide, and will provide significant savings for government-run and private health systems, its inventors believe.

The device – to be marketed under the name Bivacor – also will deliver an alternative for people with heart disease over the age of 65, who are currently considered by most doctors to be too old for heart transplants.

The key element of the Bivacor's revolutionary design is a pump that can duplicate the function of both the left and right sides of the heart in a single, small device.

Driven by tiny electromagnets, the pump's twin rotors can alter speed and position to suit blood-flow demands that fluctuate depending on a patient's activity.

Most existing artificial hearts or supportive pump devices are external, and usually pump through just one side of the heart.

That places extreme limits on patient mobility and can reveal problems on the other side of a diseased heart.

The Bivacor allows patients to move around and reduces the risk of infection, by being secured inside the body and without external tubes.

A team of biomedical engineers, intensive-care specialists, cardiac surgeons and cardiologists has been working on the project for seven years at Brisbane's Prince Charles Hospital, one of Australia's leading heart hospitals. One of the group, engineer Dan Timms, 30, devised key elements of the design after watching his father die of heart failure at the hospital two years ago.

He perfected the artificial heart's impeller – a twin fan inside the pump that can spin at different speeds and also tilt to adjust blood flow and pressure.

Dr Timms unveiled his invention at a recent heart conference in Paris.

Professor John Fraser, 40, director of the Critical Care Research Group (CCRG) at Prince Charles and the leader of the Bivacor development team, said the invention was lauded by heart experts.

"After Daniel gave his presentation, the conference concluded that the device would revolutionise artificial heart technology," Prof Fraser said.

"One of the world leaders in cardiology exclaimed, 'Within 10 years, all artificial hearts will be based on this revolutionary Queensland design'."

Once in production, the Bivacor, which has been patented, is expected to cost about $60,000 a unit.

That compares with external heart machines – which cost up to $600,000 each – that are currently used on patients who can wait in hospital for up to six months for a heart transplant.

Remarkably, most of the funding for the Bivacor project – about $250,000 so far – came from the Prince Charles Hospital Foundation raising funds through selling ice creams at the Ekka.

"Despite repeated attempts, there has been no money forthcoming from Queensland Health or Government," Prof Fraser said.

"Jon Roberts (chief executive of Prince Charles Hospital) has been outstanding, but can only do so much to support us."

The Bivacor is expected to be in clinical trials in the next three years if the team can secure funding of $3 million.

A German company has approached the team to fund development, which has both pleased and disappointed the research team.

"It would be a shame to see such a Queensland home-grown project go overseas," Prof Fraser said.

Representatives of the CCRG team are in Europe this week to discuss the development of Bivacor with international companies.

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