The Journey continues with Cameron Craig's (and Michael and Abbie's) Heart and Health: Results of Cam's Heart Cath

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.

Saturday, May 5, 2007

Results of Cam's Heart Cath

Cam had his Post Fontan heart cath on Tuesday morning and we got really GREAT NEWS !!!

No the other half of his heart hasn't grown back ... but....NO more interventions .. nothing had to be fixed .. it's all doing it itself .. (all the extra bits etc)

Talk about being blown away we just can't believe it !!!!! Chris and I were dumbfounded .. and I was almost ready to cry !

His Left Pulm Artery is now at the lower end of normal (ie his Right Pulm Artery is 10mm & his Left Pulm. Artery (the one which was narrow) is 6.8mm) but they are willing to see what it does the next couple of years .. his collateral arteries (the extra ones the heart developed to help him out - NOT!!) have GONE !!!!!

His lung and heart pressures are great and they are talking maybe nothing but paediatric visits for the next 2 to 3 years!!! Yes you read that right 2 – 3 years !!!!!!!!

It still is a little bit hard to take in .. they are to discuss his case next Monday then send us the follow-up plans then .. and I think until then it will still seem a bit unbelievable …. but Wahooo!!!!

Before the cath they were going through the consents with us & going through what they were expecting to find .. and outlining the risks etc as they have to .. and then the cardiologist came looking for us while we weren’t there & we were freaking out .. as he didn't catch up with us .. & had to go to the next one so we were like arrggh ..

So when he came to talk to us we were expecting some sort of news .. but couldn’t quite figure out why Cam wasn’t on prophylaxis antibiotics with them talking about a stent or coils having to be done and checking in to his low heart rate (as is the case with introducing "foreign bits" in to your body) so when he came to talk to us & went through everything we were waiting for something & when he finished Chris & I both looked at each other & I said so you’re saying NO interventions .. he had nothing done … and he was like .. Ahh yes that was what I said .. (you could easily have added a duh ! to it .. but he didn’t thank goodness – lol) . You seriously could have knocked me out with a feather !

We are OVER THE MOON .. nothing more to be done ... in the foreseeable future we can't believe it ..

He was so brave too ! with all the doctors and tests etc before hand ..and is happily pulling his pants down and showing everyone his “hole” in his groin “where they put a camera in up to my heart to take pictures” …

Only a little bit of drama .. when isn’t it – lol …

While he was in recovery his heart rate got low (which if course his does) .. and it seems they woke him up as they were worried (as no-one had told the recovery nurse that his HR is normally low when he’s asleep) and so when he woke he was quite distressed .. as we weren’t around … (and we can all guess what its like to come out of a GA .. when you’re not ready ) .. so thankfully the recovery nurse got us to come immediately and Chris & I were able to calm him down after some time … but it was good that they rang us rather than trying to sort it out themselves .. which probably would have made things worse … Chris was saying that with his Dental Surgery .. that he was there when Cam woke up and it was done in his own time .. and he was really really calm .. not distressed at all … and we think that this was the difference … that the nurse had helped him to wake up .. when he wasn’t ready & he saw someone he had no idea of knowing . and this had freaked him out ..

Also just as we were coming in to Hamilton we got a call from the registrar (the next day in the afternoon) saying .. Mmmmm .. we are just reviewing Cam's x-rays & we think he may have a small bleed from the groin from the artery into his stomach where we went in .. Are you still in Auckland and do you think you could come back in for a scan? .. & we're like ahh No! (As in its about 1 & ½ hours). Then he was talking to someone in the background & they asked if he had stomach pain (which he didn't) .. and asked a few other questions to see how Cam was … so anyway the long and short of it .. he may have had a small bleed from the artery ..into the stomach .. but they think it probably (by this time) would have closed itself up ... or clotted as I was saying to them he had just walked around Auck. Zoo for 3 hrs with no complaints .. & they were like Ahh no he wouldn't have been really interested in doing that if he has a bleed ..

Anyhoo .. we stayed in Hamilton over night & they said if he developed any pain in his tum .. to take him to ED & get them to page him .. and explain about having the cath .. as it was only a suspected bleed and they weren’t too sure .. ..but nothing eventuated .. but they were covering all bases.

The other great news is that his thyroid function tests have come back normal after 5 weeks of being off Thyroxine .. so now he’s only on Warfain …

So now we are back home .. back to “normal” HLHS life .. testing INR levels to get it back up to therapeutic zone … and of course giving his Warfarin .. but a little less worry than before .. (I don’t think the worry ever stops .. but it is slightly less today – lol)!