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.

Wednesday, July 15, 2009

Transplant girl healthy after heart removed

Amazing !!!!!!

From: ninemsm.com/health

Hannah Clark's heart failed when she was a baby, but has now recovered, baffling doctors.

Hannah Clark's heart failed when she was a baby, but has now recovered, baffling doctors.

A British girl who had a donor heart grafted onto her own after suffering cardiac failure as a baby has had the transplant removed and is living a healthy life with her own heart.

The case of Hannah Clark is thought to be the only one in the world where a child's failing heart recovered enough for the donor organ to be removed, the British surgeons told reporters ahead of their report in The Lancet journal.

"The possibility of recovery of the heart is just like magic," said Professor Magdi Yacoub of Imperial College London, who treated Hannah from the beginning and co-authored the journal paper.

"A heart which was not contracting at all at the time we put the new heart to be pumping next to it and take its work, now is functioning normally."

Hannah, now 16, suffered as a baby from severe heart failure due to cardiomyopathy, a problem with the muscle of the heart, and in July 1995, when she was two years old, doctors transplanted a donor heart next to hers.

The new organ soon took over much of the functioning of her own heart and Hannah, from near Cardiff in Wales, began to recover.

However, she suffered from a type of cancer known as EBV PTLD, a common side effect of the drugs given to transplant patients to stop their immune systems rejecting new organs.

She was treated with chemotherapy and other drugs but the cancer kept returning. Doctors reduced her dosage of immunosuppression drugs to stem the disease, but as a result, her transplanted heart began to fail.

In contrast however, her own heart recovered and began functioning normally.

In February 2006, the team decided to remove the donor organ so the immunosuppression could be stopped — something that had never been done before.

Thirty-nine months later, Hannah has completely recovered from the cancer and her heart is functioning normally.

Yacoub and the team responsible for her remarkable treatment said her case offers vital clues to the study of transplantation, heart recovery and malignant disease.

The report's co-author Victor Tsang, a consultant at Great Ormond Street children's hospital in London, noted the research was also useful in the development of temporary artificial hearts for children suffering from cardiomyopathy.

"It is possible for the patient's own heart to make a full recovery if it is given adequate support to do so," he said.

"This is an important piece of knowledge as we are now gaining more experience with mechanical support for the failing heart in children."

Hannah has just completed her GCSE exams and is heading into the final two years of high school where she plans to study childcare. She goes out with friends, plays sport and has a part-time job working with animals.

She had to take about seven tablets morning and night for the immunosuppression treatment, went through several rounds of cancer treatment, suffered kidney failure and at one point was left barely able to breath.

At one point her family were told she would not survive the next 12 hours, and Yacoub praised her courage and that of her family, saying: "The lesson is — don't give up."

Her father Paul told reporters: "It was very worrying and stressful, but we kept on, saying 'come on Hannah, you can't give up, you've got to keep going.'"

Her mother Liz thanked the donor family whose five-month-old baby daughter provided the transplant heart, saying: "They lost a child, we've gained our child — how can I ever thank them?"

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