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.

Thursday, July 3, 2008

Sharing .. something I was sent ...

I was sent this .. and it truly is an amazingly piece of writing and oh so true !

When you are suddenly thrust into the role as a parent with a seriously ill child

Personal views by Sharon Stevens after her son developed serious heart failure in 2006

  • You learn that each day of life is a gift and a blessing, and can change or be taken from you at a moment’s notice – and nothing you can say or do will change that. You have no choice but to deal with what has been dealt to you.
  • You feel life is surreal and wonder if this is really happening to you and wonder when you are going to wake up from this nightmare.
  • You feel helpless, and give your child over to these strangers to save your child – sometimes strangers that are much younger than you or from another country or faith, but who you now place your total faith in. You want them to know that this is the most important, wonderful child in the world – he more than any other deserves to be saved.
  • You let these strangers pump your child full of drugs that you know have serious side-effects, but you know without them your child will not have a chance to recover.
  • You experience despair, pain, grief and extreme sadness like you have never known before. You also feel such an overpowering love and desire to protect and save your child like you have never known before.
  • You cry like you have never cried before, with such strong despair. You are very emotional, regardless of how strong you once were. You realize the song words “my tears could fill an ocean” aren’t an exaggeration. You are often fighting back tears welling up in your eyes. The smallest thing, funny or sad, can make you cry.
  • You get relief from your child making it through another day, knowing that each new day brings new hope, and new technologies discovered.
  • You worry about the future – for you and your child. Goals, hopes for the future suddenly need to be re-focused, re-thought. You don’t want to face the future, then you can’t stop thinking about it.
  • You grieve for the life you had, that your child had, that is now no longer.
  • You feel your own heart is breaking, how you would gladly swap places with your child, to give them a chance to experience all that you have (and that all people should have) – falling in love, marriage, children (your grandchildren), the big OE, employment, passing their driver’s licence, their first car, their 21st …….
  • You learn the art of “two faces”. One the brave, strong, coping face you present to the world, the other very private face that very few see – the grief-stricken, heartbroken, devastated, very scared face.
  • You find the petty annoying little things and negative people, or people that hurt you or your child in your “old life” to be just that – petty – and better out of your life.
  • You find an inner-strength you never knew you had, and had admired in others when facing their own major struggles. You learn that it is there, deep inside you – it is there, we all have it.
  • You treasure every moment of your child’s life, every breath they take. Each and every one of your children become even more special and you love them with such an intensity that you never dreamed possible – and you already thought you loved them as much as humanely possible.
  • You suddenly need photos, lots of photos, mementos of your child’s life – memories are so important. You are very thankful that you have been given this chance – it could have been so different …..
  • You learn new words, new sayings, new abbreviations – all related to your child’s illness, words you didn’t even know existed, now you rattle off easily.
  • You learn denial – to ignore what might happen, instead to cherish and enjoy the moments you have now. But denial must be short term.
  • You experience and take please and comfort from the small things in life – a kind word, an improvement no matter how small (even 1% is better than nothing). Lucky superstitions give you hope – a lucky room number, a dove on the windowsill. You wish to a bright star. Every little bit helps.
  • You want to talk to other positive parents of similarly affected children. You want to hear their success stories, their goals achieved. Their success gives you hope. You don’t want to be with the negative ones.
  • You sit there staring at your child as they sleep, watching each breath they take – hoping and praying they will recover soon. You don’t want to leave their side, you don’t want to miss any milestone, or not be there if something goes wrong. Being apart and away from them is oh so hard.
  • You want to give your child everything you can or ensure they receive everything they can that will make them happier or healthier. Giving them pleasure, making them happy – gives you pleasure. You want them to experience all of life’s happiness that they can.
  • You become humble and learn to ask for and accept help. You marvel at the number of friends and family who offer help and prayers. Kindness, help and caring of others astounds you. It brightens your day and your outlook. What goes around comes around.
  • You enjoy talking to friends who want to talk about everyday things – things that used to give you pleasure e.g. your hobbies, your sport, your pets – this time out is so important, and gives you strength when it is time to come back to reality. You are thankful for your true friends.
  • You know that “special” parents are not chosen to be the parent of a special needs or seriously ill child, we are everyday, ordinary people from all walks of life. We have no more coping skills than any other, we just learn them as we go.
  • You are so grateful for the support of your partner, someone to cling to, share the pain, and grieve with who truly does understand what you are feeling.
  • You learn that the most fundamental lesson all doctors and nurses learn when they have a grief stricken parent crying and distraught in front of them, is to quietly pass over a box of tissues.

You know there is no doubt your life will ever be the same again.

You know you will never be the same person again.

You know where there is life, there is hope and miracles DO exist.

You learn to wait patiently for your family’s miracle, knowing it may take time, but positive it WILL happen. You will smile again.

Our miracle DID happen – we hope it does for you to. Sharon Stevens, April 2006


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