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, February 1, 2006

Michael and Cameron’s 2nd Birthday - April 2005

Well the boys are 2 already – holy smoke where has the time gone ….

Their birthday was on a Sunday this year and I made Winnie the Pooh and Tigger cakes. We had a small afternoon tea and Nana and Aunty Sonje came down to celebrate and we invited friends Nigel and Nicky with their twins Callum and Logan. The boys got new bikes from us and Little People Town Square and Train Sets. Aunty Alicja called in on the way back from their holiday and so all of the cousins from the Dousnki side enjoyed the birthday ‘fun’ with them. They received wonderful presents from all of our families.

It was a nice relaxing day with out stress where we could sit and enjoy watching them play with their presents (especially the Bubble Machine) and watch their faces light up when they saw their bikes and the cakes! At this age you can see how they can appreciate their gifts more and both of them really had a ball.

Cardiac Catheter 14 April 2005

Cameron was admitted on the 13th April and had the usual x-rays, blood tests, echos and ECG. I was wondering how on earth we were going to keep Cameron still for the echo, but the sonographer put on a Bob the Builder video and soon after the jelly stuff was put he gently fell to asleep in my arms, for a whole 45 minutes. I said to the lady “We should get the ECG technicians in here too while he’s asleep” – she agreed and so all the pre-catheter tests were done with not too much problem – except for the blood tests of course!

So the rest of the afternoon was spent signing consent forms with the anaesthetist and the cardiologist and getting an understanding of what they would be doing. It was mentioned that the Left Pulmonary Artery (LPA) still looked narrow and a decision would be made during the catheter what to do next with it.

Cameron was the 2nd child on the list for the catheter the next morning and did remarkably well with no drink or food during this time. His last drink was about 3.30 am. At about 10.00am he was given a pre-med as he was VERY hyper, running around, and up and down the corridors. The anaesthetist decided upon seeing all this that I might be a good idea to calm him down to get his heart rate down a bit but the med didn’t work and he pretty much just the same. We distracted and played with him in the Hospital Play room.

Then at 11.00am Chris and I both went down to the catheter lab with him and the nurse talked away and blew bubbles for him (which he loved and squealed away at) until it was time to take him in. I donned the shoe covers and other garb and took him in, and about 10 – 15 seconds after I held the mask near his nose he drifted off … At 2.45pm we got a call from Dr Clare O’Donnell (Cameron’s cardiologist) and she told us that they didn’t coiled anything but they did have to balloon the PA and that we could come and see him in recovery in about an hour.

After the final catheter for the day the cardiologist came and talked to us in HDU – where Cameron was for recovery as he was very upset upon waking and his sats were in the low 70’s. She outlined that they did have to balloon his PA (as expected) as it was moderately Hypoplastic (& in fact it had a real kink in it) as was 5mm, then 3mm, then 5mm, so a fair amount has now been ballooned to 8mm & they hope with the increased blood flow the rest will grow to this size. There were also a large number of collaterals but at this stage they are going to leave them. She said if they were doing the Fontan next month say, they would coil them now. but because it is not this year they will leave them, then do the fontan at the end of 2006, or early 2007, and following this, check to see what effect the colls & anything else have on the pressures & fix them afterwards ...

We had a real good talk about what was done, to be done & she showed me all the angiograms & showed me a slideshow of the LPA being dilated & the RIMA where there are collaterals & the LIMA (which was coiled last time & showed me the effect on the colls (as in none there anymore) & a few x-ray pictures, & the sonographer went thru the echos with me. She also sat down and went through all my questions I had after the Catheter & then the next morning went through my general questions I had about HLHS.

The only bad thing that happened was that Cam had really really bad swelling in the face the morning (about 3am) after & so had to be observed for most of the morning & afternoon ... we don't know if it was because of the increased blood flow through the PA or whether an artery in the neck got pressed or nicked when they did the angiogram or whether it was a reaction to the dye/meds ... but we stayed close to the hospital overnight so if it happened again he would be re-admitted, but it looked fine this morning so Cam and I were able to fly home EARLY in the morning 6.15 bus & 7.30 flight ...

Chris had his flight the night before but because we got ours booked late by the hospital we missed out, as it was the start of school holidays.... so we got to stay at RMH in Auckland.

We were pleased to be home, and we think Michael was more excited to see Cameron then he was us - they were being really funny hugging each other & pointing to each other & kissing ... ooohhhh!

We also met 2 other HLHS families - both whose babies are either coming up to the Glenn. (& also heard of another family just around the coast from where we live) - so they were interested to see how well Cameron looked & have a chat & ask questions.

So no more investigative procedures until maybe late next year or the start of the year after …

Cameron’s First Haircut

On the 11th April, the day before we flew to Auckland for Cameron’s cardiac catheter, Cameron had his hair cut in Stratford by Kelly. He was very good and although shy at the start once Michael started to play peek-a-boo in the mirror he thought it was great fun. He looked so grown up sitting there all happy. It was amazing to see how different he looked after the hair cut when you compare the photos. Of course I have kept his curls … Michael didn’t want to miss out on the fun and wanted to jump up on the chair too and so Kelly snipped his hair only a couple of times …

Here are the photos:

Before and After

No comments:

Post a Comment

Subscribe to: Post Comments (Atom)