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, August 2, 2006

Abbie's Heart - August 2006 .. and a catch up ..

Abbie had a echocardiogram to check out her heart "as a precaution" due to the severity of Cameron's heart condition & Michael's condition & unfortunately we now have a third Heart Child in our family as she has Aortic Stenosis.

She has a mild case at this stage caused by thickened leaves of the valve but because of the nature of aortic valves she has to have frequent echos to ensure that it doesn't get worse, and just stays the same, as we were told that unlike Michael's mild Pulmonary Stenosis where a number of the cases it corrects over time (as Michael's did), Aortic stenosis usually stays the same or gets worse.

Don't really know how to explain how I feel, pretty sad, angry, but relieved it isn't serious, but have very mixed emotions about having another child who need prophylaxis antibiotics, needs echos, and needs follow ups. Would have been nice to have a "normal" child.

We have been told that this will not affect anything with her at the moment, but may when she is older if it gets worse, (especially during pregnancy and extreme exercise!) & but of course it would be nice & we all have our fingers crossed that it will stay the same (or through some miracle get better)

But you know after all we've been through I know its selfish but its just that I wanted my "baby girl" to "not be broken too" if you know what I mean !!

It also proves to the people who kept saying to me that it was the IVF that caused the Congenital Heart Defects - that they were wrong !

We may now also have to do genetic testing but mainly for the boys & Abbie's benefit for if they want to know for if & when they have children. We were again asked about the history of heart defects in our families - but neither Chris or I have any .. so it’s obviously just that Chris & I produce kids with CHD's.

My husband - who always looks at things positively, after giving me a hug, in trying to lighten the situation said "Oh well at least we can bring all the kids to Heart Children special events, as Heart Kids now, so Abbie won't feel left out".

On the bright side - the boys are starting introductory visits to kindy & start "for real" next week - goodness who thought 3 & 1/4 years ago (well 4 years ago before I did IVF) I would be doing that!! Michael is going through the very independent stage & is now toilet trained during the day. He was having very bad tantrums & meltdowns as he was not getting the attention due to all that was going on & still does, but we are working on it as we all know there is only one of me.

Cameron has recovered well, is still spooked by people he doesn't know but is getting better with new people. He has done remarkably well considering all he went through 4 months ago. His heart of course is pretty messed up & he will have more surgery next April for more stuff they found. He is on Warfarin (a blood thinner) so we have to do a finger prick test (similar to a diabetes one) every 2 - 4 days depending on the reading, which we do at home with a machine that we came home with from Starship. It had been stable but in the last week has been up & down so we change his dose to get it back to where it should be. It was really high 3 weeks ago & my GP freaked out so I rang the hospital & they were very calm & said just watch for seizures, or bleeding from his nose & try not to let him do too much vigorous (sp?) play which would cause bruising or bleeding (I laughed at that - very blasé' no big deal to them - but how can you stop a busy full on 3 yr old) so I was a bit on edge as you can imagine.. especially as the boys are really in to play fighting & building castle & jumping from them ! Had a big talk to them about Cameron's blood being sick & that he would get really sick if he got hurt & they looked at me as if I was bananas & kept on playing - hee hee.

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